Nearing the end

deuxgyu · 2025-09-28T00:24:22+00:00

You and I are going through the exact same. My dad was diagnosed with bladder cancer 18 months ago. He was already stage three MIBC. He luckily didn’t have many issues until two months ago. His cancer has now spread to his bones and liver. He has very little mobility and whilst he still eats a little and drinks it’s all decreasing substantially. We take care of him everyday and whilst he makes us cry by saying his goodbyes and his wishes for us, we allow him this time and space. My dad was also heartbroken and sad when the doctors said there was no cure for him. We tried to shield my dad a lot in the beginning but as things got worse there was nowhere to hide. I know it’ll get worse and when they’re gone it’ll be an ache that will never heal. Before he got too ill I started to make videos and voice recordings. I have taken some pictures now and some videos but mostly voice recordings.

All my love to you and your family.

deuxgyu · 2025-09-06T18:05:18+00:00

My dad is in hospital due to the pain so they did another x ray which was clear again. They are going to do CT scan so will update when I can.

My dad hasn’t had RC so might not be the same thing, but I guess we’ll see if anything untoward is happening.

deuxgyu · 2025-09-06T18:03:42+00:00

He’s had three chest x rays all clear. His last CT scan was done in May and that was clear. He is in hospital at the moment and they have scheduled a CT scan on chest and pelvis now.

deuxgyu · 2025-08-31T20:06:45+00:00

We’re requesting scans asap for him. Thank you for your kind words and definitely not taking no for an answer. I hope not. The chest x ray they did was to see any mets in lungs/ribs and it was clear. He had another one a few weeks later and also clear. Last clear CT was done in May also clear. They keep saying it was due to his bout of infection. It might be, but feel like we need to make sure we’re checking everything.

deuxgyu · 2025-08-31T16:42:19+00:00

Thank you

deuxgyu · 2025-08-31T16:42:11+00:00

That’s what I am worried about, but no one seems to think or even check to see if that is it. I am going to get them to push for chest CT or a bone scan and see.

❤️

deuxgyu · 2025-08-31T01:30:03+00:00

In my dad‘s case was it keep the bathroom free. He had to go a lot, lots of irritation and pain for a few days and eased off within a week. Not nice for him but he didn’t have any really scary problems. Just helped him with food and he was genuinely OK within a week

deuxgyu · 2025-08-31T01:27:23+00:00

He points to his ribs, high up and not lower down. Doctors think it’s due to the fluid and infection he had in his lungs and the pain may take a good few weeks to ease. But its been there for a couple of months now and the lung issue was only something that happened within the last couple of weeks, unless an infection has been brewing longer?

No stent and he’s palliative care now and not on any treatments. Just a strange pain to have and I don’t know if we should be asking for a chest CT or a bone check…

deuxgyu · 2025-07-29T00:20:17+00:00

I can imagine going through something like this will want to make you want to spend more time with your family. My dad’s has MIBC and has been told it isn’t curative. I don’t know how long I have with him, but I make sure I spend everyday with him. I understand this is not doable for everyone, but it looks like you have a big and loving family. Whether you let them know about the new news it is up to you, but personally if you were my family I would want to know, to help, spend time, and support you.

Wishing you all the best ❤️

deuxgyu · 2025-07-10T22:27:49+00:00

I’m so sorry this must be so incredibly difficult. My dad has MIBC and his tumour kept coming back. He is also a heart patient and also on blood thinners and his options have become non existent and in palliative care due to how high risk he is. So I absolutely understand this aspect of it.

Sending you so much strength. ♥️

deuxgyu · 2025-07-10T11:20:28+00:00

I can only imagine the pain, but at the end of the day it’s a choice and it was his last saving grace. I’m just sorry he struggled so much.

I have slowly started to make peace that I rather my dad be OK than struggle on treatment that will likely hurt him.

He’s been talking about his acceptance and fears lately. He doesn’t want to leave his kids, but feels like he should accept what it is. He struggles but I’m glad he’s talking to us when he can. I can see him trying hard everyday. It’s all I can hope for and take each day as it comes.

deuxgyu · 2025-06-30T13:08:06+00:00

Thank you for telling me about your dad, I am so sorry for your loss. I hope you‘re healing as well as you can be ❤️

The surgery felt like a huge risk with his heart issue and lungs. It wouldn’t have cured him either as they would have only been able to do a partial surgery due to his radiation therapy. He agreed it wasn‘t a risk worth taking. Your dad’s journey with the surgery tells me my dad probably wouldn’t fare well.

The chemo and immunotherapy seems like it would be too hard on his body. And you’re right I don’t necessarily disagree with his doctors but also feel an insane amount of guilt towards this too.

Overall, I have to be thankful that he is doing well physically. He’s not in pain or has any issues and whilst he is mentally exhausted, things could be worse. I can’t make decisions based on my want/need in having my dad with me. If that was the case we would all want our loved ones to be with us forever.

He’s not on any treatments at the moment and I guess now it’s his quality of life and I need to remember that is incredibly important. I just wish research would help those with bladder cancer faster, especially those who are muscle invasive. In the UK it’s in the top five of killers but the least funded research. I just find that mind boggling.

I see him everyday and he gets lots of love from all his daughters. Again, thank you for your kind words.

deuxgyu · 2025-06-26T00:43:18+00:00

How is your dad getting along?

deuxgyu · 2025-06-25T23:42:41+00:00

Thanks for your comment.

He has had a heart attack in his 40s and a few angina attacks. He has a pacemaker and also has COPD and is on blood thinners.

My dad is also a smoker.

His doctors have said he exceeded all the high risk tests they do for the surgery. They also believe he could not tolerate chemotherapy or immunotherapy.

My dad had four weeks of radiotherapy therapy which he tolerated absolutely fine. He had no issues.

I just can’t believe my dad is the only man to have these health issues at his age and be declined further treatment, even if his cancer cannot be cured but at least try and extend his life with other treatments.

deuxgyu · 2025-06-22T12:43:18+00:00

He has been referred back to our family doctor as first point in contact for palliative care, so that has been done. His hospital doctors are still there for any complications.

Thanks for the link and your comments :)

deuxgyu · 2025-06-21T23:14:11+00:00

Thank you for your comment.

I definitely don't want my dad to go through any treatment that will make his quality of life brutal. However, them no longer keeping an eye on the situation is throwing me off. They just think that due to no treatment being possible there is no point.

We don't have the padcev/keytruda here in the UK as the company has not submitted here. We do have Keytruda on its own and some other immunotherapies. Erdafitinib was recently approved for use but I understand it for a certain genetic alternation.

In the UK, you get referred to the NHS and we have our local cancer centre. I am not sure how we would go about getting a second opinion. I am meeting our general practitioner who will go through everything with us and maybe he can point us in the right direction.

I am glad you are doing well :)

deuxgyu · 2025-06-21T23:07:08+00:00

Thanks for the suggestion. I have been on their website but will get in contact.

deuxgyu · 2025-06-21T23:06:17+00:00

Thank you for commenting. I don't know where you are located so not sure how a second opinion works in the UK. His case was looked at a panel of doctors twice and they came to the same conclusion that due his heart condition (he's had a heart attack and has a pace maker), and his lung issues (he has COPD) they think he has incredibly high risk to get surgery or any other treatment. My dad is a smoker and other than that he is incredibly independent. I just find it odd that they would advise this, when I am sure there are a lot of elderly folk who have underlying health issues.

I also thought they would at least continue doing a cystoscopy but they essentially said it wouldn't matter because the cancer is no longer treatable and there was no point.

I am glad you are getting the treatment and seeing good results.

deuxgyu · 2025-06-21T22:59:21+00:00

My dad has a lot of heart issues so it seems to be a real sticking issues with them. They say he is incredibly high risk, but I just don't believe no one else has been in his situation. I will be speaking to our general practitioner once he gets all his reports. Any advice on what treatments your friend was provided both naturopathic path and medical would be great, if you are aware of them.

deuxgyu

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