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Completely devastated

Posted 07 Jul 2019 at 13:07

Hey all, basically looking for some support. My dad (58) was diagnosed with prostrate cancer 2 years ago with a gleason score of 8. In February this year he was rushed into hospital due to urine retention and severe kidney infection. Thankfully he recovered well but they discovered boney mets in his spine. This has now spread like wild fire, hips, thighs and lower back he also needs blood transfusions as his bone marrow isnt working properly anymore. Last week we were given a prognosis of months to a year if we are lucky as long as he doesn't surcome to an infection (he has a catheter fitted). I'm just crying all the time I'm angry and part of me doesn't believe this is happening, I have a physical ache in my chest and I'm so scared for what the next months are going to be like. My dad is hopeful and determined which is good but I'm just crumbling inside. Macmillian are on board now and he is getting carers in too, he's taking MST and oramorph for pain and he's on aribiratone. 

Is anyone else experiencing this or similar? 

Posted 07 Jul 2019 at 16:34
Just wanted to say how sorry I am for you all. Sending wishes and strength x

If life gives you lemons , then make lemonade
Posted 08 Jul 2019 at 00:12

Thank you ❤️ xxx

Posted 08 Jul 2019 at 00:15

Yeah I will definitely ask about trials thank you for that suggestion!! I'm sure I'm driving him mad, I'm always texting and calling him when I'm not with him. But as you said I'm going to make lots of lovely memories and try to stay as positive as I can xxxx

Posted 08 Jul 2019 at 18:48

I’m so sorry to read this too. Sometimes Prostate cancer is just horribly aggressive and it sounds as though this is the case with your lovely dad. It’s so unpredictable in its progress. I hope your dad is getting PIP and has a blue badge, these matters are so helpful at this stage. He should ask his doctor for a DS1500 if he wants to put claims in for support. There is a thread on here somewhere about benefits. Honestly, it’s made such a difference to us.

Thank goodness MacMillan is there to help you all.

i wish you all the best.

love Devonmaid xxx

Posted 08 Jul 2019 at 19:56

Thank you so much, he is getting pip and another benefit too but not the blue badge which I will look into getting now! Thank you for that suggestion. Macmillian are brilliant and have helped with his benefits and my melt downs lol. I'll keep you all updated xxxx

Posted 09 Jul 2019 at 11:52
Hi Holzjd

I fully understand your pain and distress.
My Dad has Prostate Cancer with secondary bone mets in his ribs, shoulder, 2 compression fractures in his spine, arm hips and now in his bladder. He has a catheter fitted. He has always managed the cancer well until the beginning of this year when he developed COPD and had Urinary Sepsis. Both these illnesses allowed the cancer to really take hold.

He has been having hormone injections for years and in May had 5 days of Radiotherapy to his spine. He was given Enzalutamide but stopped after 3 months as his PSA had risen to 545. Now monthly Zometa IV.

Now its just HT injections and pain relief when needed.

He has been in hospital for day care as since his last Zometa drip 3 weeks ago he hasn't been able to eat or drink without being sick.
They have said his platelets ate low at 38 but not low enough for a transfusion. He is very weak now.

Dad isn't ready to give up. His heart is strong. He doesn't understand with an escalating PSA why jis consultant only wants to see him every other month now. He asked if they had given up on him.

I try constantly to keep his fighting spirit up, but its exhausting. I feel broken inside. I have a great supportive family who look after me but I need to talk to someone about this and they don't want to hear about the sadness.

I just want someone to tell me how long I have with Dad. Im not ready to let him go.
Posted 09 Jul 2019 at 12:03

Hey Daddysgirl69 

Gosh I'm so sorry for you and your dad. It sounds like we are both feeling the same way at the moment it's so so hard.

How is your dad in himself? How are you coping? Talk to your family they are there for you always but if you want to talk to someone else you can message me anytime, I'm right there with you.

My dad has just had a CT and he will get the results this afternoon (because he's in hospital). He was quite sick yesterday but that seems to have settled. He doesn't have any friends or family (his own choice) so it's just me that helps him, he's coming home tomorrow all being well and thankfully he only lives round the corner as I've 2 boys both with autism. It can be really tough but I just try to remember I'm only one person and can only do so much before I snap.

Dont fight how you feel inside, if you feel sad then cry and that's OK, go with your emotions and don't fight them. Everything you feel is normal, sometimes just knowing that is a comfort. 

Holly x

Posted 09 Jul 2019 at 20:50

Hi Holly

So nice to have you out there to speak to. 

Dads still not able to eat without gagging or being sick so no improvement there. We await the next lot of blood results so will hopefully know more then. 

Have a good few days with your Dad x

Posted 09 Jul 2019 at 20:52

Bless him not nice for him at all. I hope things settle down a bit for him and maybe they can give him something to help him.

Remember to look after yourself 

Holly x

Posted 31 Jul 2019 at 01:29

I am so sorry about your Dad, it is heartbreaking - this disease.  My husband is a year in, Gleason 10 and was metastatic when he was diagnosed, widespread in his bones.  6 sessions of Taxotere (chemo) wiped out most of the disease in his bones.  He is on Lurpon and started Xtandi a month ago (because his PSA was going  back up again).  Has your Dad been given these treatments?  We went right to Mayo which fortunately for us is 60 miles away.  If you want a consultation and need a place to stay message me privately, maybe Mayo Clinic can help him.  We will add him to our prayer list.  God bless you all.   

Posted 02 Aug 2019 at 12:18

I'm so sorry that you too are faced with this horrible disease, I'm glad tho that the chemo helped with the spread to the bones and hope your husband is feeling some benefit from it. My dad had chemo one beginning with D and he is on 2 hormones. He was given abiraterone as well but unfortunately now nothing has worked for him, his consultant said on Tuesday past that now he needs Macmillian for end of life care as he's not responding to any treatment and his bloods are very low. He's still able to wash and dress but he sleeps most of the day and eats very very little, he's lost an enormous amount of weight. I'm just trying to make each day count for him, even if it's just to make him smile or laugh. Thank you for your kind words they mean so much when faced with such a horrible time. Xxxxxxxxx


Posted 04 Aug 2019 at 01:30

Wondering if any of you live near a hospice? Ours offers free counselling to patients and family, also day care with great activities, therapy, company and information. Also much better for pain management and inpatient care when needed. 

Posted 07 Aug 2019 at 23:22

Yes my Dad has been referred to the hospice but unfortunately he was taken into hospital last night. He has another nasty infection in his bladder from the catheter which the Gp initially thought might have been sepsis. Hes very un well and very thin, hes just been sleeping most of the day, chatted a little but I could see he was too sleepy. Its so hard to watch him just lying there when even just a few days ago he was at home and as normal as could be. The doctor in hospital said he may not survive this infection as his heart had been under a lot of strain as his potassium was so low and his red blood cells. Every time my phone rings I feel sick in case its the hospital, part of me wants this to all end for him so he doesn't have to suffer any more, the other part of me feels so angry and cheated that he is being taken away from me hes only 58 and resembles someone in their 80's. 

ill try to up date a bit more. 

love to everyone facing and fighting this horrible disease 

Posted 07 Aug 2019 at 23:26

So sorry to hear that. Perfectly natural for you to have these conflicting feelings. I hope they can keep on top of anything that is causing your Dad discomfort. Thinking of you.

Posted 07 Aug 2019 at 23:37

Thank you ❤️

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