Father going downhill very quickly

Hi Fiona, sorry to hear about dad, is he just been on the chemo for treatment? Not hormone therapy? We are very new to this experience and haven't had chemo although its in the bag if needed.....my partner has been on hormone therapy for 5 weeks now and the fatigue is real, although not as bad as you are describing for dad. 

There are many on here with experience of chemotherapy so you will get plenty advice etc. It's great that dad's psa had dropped from 250! 

All the very best️

I’m sorry for your worries. There are many clinical specialists that can help you understand what’s going on but a patient that’s content in either ignoring or avoiding the issues regarding his health is going to test both you and your mums resolve.

Meetings in clinic and contact with the GP are the best places for advice, if you can connect, but the patient can be silent or refuse to work with you so unless he wants to eat or take pills he doesn’t have to.

Firstly you are not alone, we are here to help if we can, with experience and support. You sound like you’re at wits end but that’s because you love him and what this poxy disease does to couples and families is truly awful.

Secondly, most of my issues are made worse by the mental side of the illness. If my heads in the right place then everything is better but often I’m in the doldrums and the wheels fall off and I feel lost, angry, alone, tired and emotional. His mental health is key.

As for the eating habits, I drift from eating little to eating everything in the kitchen, but I always try to eat something. My sole objective is to keep my weight up for strength. The chemo I’m in drains me (I’m 61 and fairly fit) but I sit and lay most of the week. I’m not especially hungry ever, I chose to eat. It’s another mind game. You can’t force feed your Dad but you can try and figure out why he’s not eating much, or what treats might help him regain his habit of eating.

I feel sorry for myself daily and cry a lot. I’m cursed by this cancer and it’s not fair. But I’m normally proactive and busy myself with self advocacy and will always try to start the day strong even when I know I’m not going to do much. I went for a mile walk yesterday with my Darling and that was all I could do. But that’s the first time in a week.

My limitations are a concern but the new me has to deal with that.

If your dad is a talker you should be able to draw out what’s on his mind. It’s there that his whole body is controlled. Either that or get some one he will talk to or a professional to help you understand him.

Sorry I’m not a lot of help but inside his head is probably a terrified guy, like me.

Better advice will follow, I’m up early so I thought I’d start the ball rolling. I hear your worry and frustration. Don’t ever give up.

His PSA is brilliant by the way. 

 Mr U - thank you for your honesty.  I’m in awe of men like you - incredibly strong, yet able to recognise and call out times when you need to let off the pressure and cry etc. You are a great help on this site, and I salute your courage.   AW

Thank you for your reply. Yes my father is terrified about what’s happening to him snd he cries a lot too. I think you have a brilliant attitude, yiu are mentally very strong.

I’ve suggested to my father that he makes use of the counselling that’s been offered to him, but he doesn’t want to. I think it’s because he was brought up in a dictatorship (not in the UK), and amongst his age group mental health is stigmatised so he’s trying to convince himself ‘not for me’.

Thank you for your honesty, it’s helped a lot. 

Hello thank you for reply. He is on tbe ARCENS protocols ;I think this is what it’s called). He has:

- hormone injection every 6 monthd

- hormone pill every day

- 6 rounds of chemo thst he finished in may

when he was in chemo he was also taking steroids but that’s stopped now.

he is taking other stuff for his kidneys but that’s only temporary (he had massive kidney stones in both kidneys but Theyve now been taken out). He also has latent tuberculosis so he is taking stuff for thst but he has an appointment in September and likely they’ll take him off thst medication too as I think it was preventative whilst he was in chemo.

his appetite is good, but he is wasting away so quickly I don’t know if this us the norm. I’ve told him to call doctor to say and his reply is ‘I’ll get better’. 

Hi FionaTheCat8377e3 a cancer diagnosis is very scary, but your father has accepted treatment (Hormone Therapy and Chemo).  The HT does mess with your head so maybe he is being affected by that, but quite honestly weight loss isn’t a normal result of the treatment, so if he is eating properly, I think he should mention this to his team.  Our normal reaction is to  hide from bad news, but not being honest with his team just isn’t helping.  I am quite surprised that his weight isn’t recorded at each visit (I know that my weight is taken at each appointment).  Please come back with any questions.

Thank you for your reply, yes I am surprised too that he isn’t being weighed. It is Spain. I’ve asked to please please mention it but they think the weight loss is to be expected and he’ll get it back.

im worried he has something called cachexia (spelling?) and that like the cancer, by the time he agrees to telling the doctor it will be too late to reverse it. 

Hi again FionaTheCat8377e3, I think it is fair to say that sort of weight loss needs to be reported and is not normal.  Perhaps the answer would be for him to just casually ask about weight loss and see the teams reaction.

From reading all the posts above I Think I understand your position. You seem to be more concerned about his position than he is.

Do you go to medical appointments with him?

It seems to me that the consensus is that his medical team need to know about this weight loss. Your father may have retreated from his life in a mental fashion, to hide from it. 

Have you considered speaking to his medical team yourself?

I think that it may be close to the stage where someone has to, and you are obviously concerned .

You have my sympathy, and my best wishes.