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Dad (profoundly Deaf) New Diagnosis

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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 🙂

User

Posted 12 Apr 2021 at 14:28

Sorry, it has been a while since I last messaged.

Dad has now completed 3 rounds of the Docetaxel and the PSA levels have reduced, he was in excess of 5000 PSA and is now down to 754, which I know is still a huge number; but from where he started is definitely so much better. He has had little to no side effects, again praying that continues as he is feeling so well.

When we started this journey back in November Dad couldn't get out of bed himself and walking was a true struggle - now he is just like a different person, full range of movement and enjoying those things he loves the most (tinkering in the garage and spending time in his garden and having walks with my Mum).

He is enjoying every single moment life is throwing at him at the moment, we have infusion 4 tomorrow and the hospital have been so accommodating, they give him a quiet area with minimal sensory overload as busy environments over stimulate and tend to cause him anxiety.

All in all, so far so good. Just got to keep battling through and hope that he has more time to do the things he loves.

User

Posted 12 Apr 2021 at 19:31

What a great update 👍

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 01 May 2021 at 18:55

Hi, what a good news update! I'm glad your father is feeling good mentally too, which is just as important.

Thankfully I am not profoundly deaf, although there are some interesting parallels to your story.

I have moderate/severe hearing loss, worst is 85dB both ears and with tinnitus in both ears. Although I usually hear reasonably well wearing high-end hearing aids and lipreading, I also have ADHD.

Having these two conditions I struggle to manage highest stress-points in life without something going wrong...or mental paralysis sets in - accompanied by louder tinnitus - and my response can be withdrawal within myself.

Long-story-short, my wife joined me at all consultant appointments anyway but soon become my registered carer in order for docs to share my patient info so that she could 'translate' for me many vital pieces of info that I was mishearing or misinterpreting. I can never thank her enough for that.

Since then I often wonder if many (possibly most?) newly-diagnosed cancer patients experience similar to some extent. When all the 'new reality' of their dx starts to sink in patients can struggle to think straight and even with normal hearing can be distracted to the point of mishearing/ misinterpreting what is said.

The 'communications' aspect can almost inevitably make life as exhausting and stressful for nearest and dearest, if not more so than the patient. Not sure there's any easy answers, but support is out there especially if your local prostate cancer group is set up with properly listening ears for spouses/ partners [sadly, mine isn't].

Best of luck with the journey still to go, with hopefully an improved outcome for your father after more treatment.

User

Posted 02 Aug 2021 at 10:56

Thanks so much for sharing your story, it is so difficult.

Dad has now completed his 2 month break post Docetaxel and has his blood test tomorrow before his meeting with his consultant on Friday.

Dad had a wobble yesterday and got a bit emotional, worrying about what his PSA levels will be like and what treatment they will be moving to. There was talk of an oral hormone treatment alongside his Prostrap 3 monthly injections.

Does anyone have any experience on the oral hormone/chemo and any pointers of what to expect?

Sending positive vibes to you all xx

User

Posted 04 Aug 2021 at 04:50

I'm guessing they're referring to Abiraterone or Enzalutamide.

They have a long list of side effects, but mostly those are the same side effects as for any hormone therapy, and your dad probably has all the ones he's going to get already.

On top of those, they can add a bit more fatigue. Abiraterone has to be taken with a steroid which can cause further weight gain.

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