Dad (profoundly Deaf) New Diagnosis

User

Posted 03 Feb 2021 at 22:27

I have had a bit of a rollercoaster since November.

Dad was suffering with back pain, and thankfully the Dr asked to do a blood test to look for prostate indicators.

Within 4 days of the blood test Dad was admitted to hospital, and as he is profoundly Deaf and uses sign language I was allowed to be admitted with him.

We have found out that he has prostate cancer with bone metastasis, and his prognosis is 2-4 years.

I am really struggling with being his main communicator and being his daughter, emotions are all over the place.

Dad has been on Hormone treatment since the diagnosis and that seems to be doing wonders for his pain, he seems so much better now than he was before the diagnosis.

He will be starting his chemo next Tuesday, docetaxel...I am slightly worried about how he will be through the treatment, thankfully I am allowed to be there for his first treatment again as his communicator.

If anyone has any general advice, or has experience with being Deaf and having cancer I would love some feedback.

Many Thanks

User

Posted 04 Feb 2021 at 01:22

Hello, really sorry to hear of your dads diagnosis.

Although my dad isn't deaf he has communication problems. I'm going with him to every chemo appointment at the moment. His oncologist and other staff allowed this. You should definitely be able to as well. Just be firm on this issue. I'd honestly would be shocked if they didn't allow you to go with him for every appointment, if you are available to do so that is.

I'll admit the first chemo was a bit scary but do know it's not so bad. My dad has had 6 docetaxel infusions and now 9 Cabazitaxel infusions. Plus many other drugs in between over the years. Its a rollercoaster ride that's for sure. I don't normally post anything but wanted to show some support because I know how it feels to be in a similar situation. Its entirely possible he has more time then they have specified. So please don't focus on that.

If I would make one suggestion that I wish someone would have given me when I started going through this with my dad 4 years ago... Worry less and enjoy life more!

Stay strong.

Best wishes to you and your dad.

User

Posted 04 Feb 2021 at 07:43

Thank you so much for your message.

I wasn't going to initially post in any chat, but felt like I needed to reach out to people that were dealing with a similar situation to my Dad. The communication thing is huge, and it isn't just letting him know what is going on, but translating it so that he understands - also the fact that people think that by giving a leaflet to him means he can read and understand! Profoundly Deaf people have a differing language structure, so even reading information needs translating. I am quite a strong person, but finding this a huge challenge.

I am thankfully allowed to all of his appointments, but will take the advice to keep on with this.

I am keeping my fingers crossed that he gets on well with the treatment next week.

Sending love and positivity to you and your Dad too.

User

Posted 04 Feb 2021 at 14:10

Do you live in the UK? If so I've found this which might be of interest:

https://www.selfhelp.org.uk/Deaf_Cancer_Support

https://bslhealthaccess.co.uk/

Perhaps they would be able to offer some help and advice. I don't know if the doctors offered you any kind of deaf translation service but bslhealthaccess seem to offer that in the UK free or charge. It might take some pressure off of you. Medical jargon is hard enough to understand without needing to translate it using sign language! I can't imagine how difficult that must be. Also maybe consider recording some of your conversations with the doctors and oncologists. If you miss something you can always go back and translate it at your own pace.

I'm hoping you'll be able to find the right support for both of you to make the cancer journey easier to navigate.

Let us know how your dad gets on with the chemo.

Best of luck!

User

Posted 04 Feb 2021 at 17:40

Thank you so much for those links, I am going to look into them and see if there is any support available.

Thanks again 🙂

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