I'm interested in conversations about and I want to talk about
Know exactly what you want?
Show search

Notification

Error

Losing it

User
Posted 23 Apr 2017 at 00:20
Hello....my dad was diagnosed with advanced prostate cancer in November after 2 months of Dr's not willing to investigate. In September his PSA's were normal but he was ill. By November after us desperately asking for a repeat blood test as he was weak, Ill and in pain. .another blood test revealed aggressive and advanced cancer. 1st treatment was hormone...didn't work so next treatment was again hormone related. All done through urology. In January he had to go to a&e for pain. X rays showed no bone cancer. Had 1st oncology Dr, start Feb.early March ....played waiting game to see if treatment worked.next scheduled apt 3rd may .early Sunday morning my parents had to go again to a&e for pain management. He said although Drs did thorough tests they questioned why he was there.....where is he to go??

Dr said would contact oncologist. WE HAVE HAD NO CONTACT FROM ONCOLOGIST OR SPECIALIST NURSES NEUROLOGY SINCE MY FATHER SAW ONCOLOGIST DR ON 6TH FEBRUARY. He is an old man who deserves treatment and is in a great deal of pain. After he wrote a letter to the gp practice begging for help. ...he was offered a telephone appointment...he declined. Only since this he was offered an emergency number for the gp practice and a mcmillan nurse.

This is an accurate account of the lacking in care...not only at home but at hospital.....NOTHING from there. Previous bone scan yesterday and eventual oncology apt is a week Wednesday. ....meanwhile my dad lives in extreme pain. This is wrong and this is an accurate acount of mischief diagnosis, treatment and more importantly care. My father is is in extreme pain.......the hospital has done nothing.

User
Posted 23 Apr 2017 at 17:22

Hello Katie,

I'm so sorry that your dad hasn't had better treatment. Firstly, please contact the PALS department of the hospital dad has attended for his RT. Have all of his details to hand ie hospital number, doctor's name etc

I'm sure they'll look into his treatment for you.

I do hope other members will be along to offer their advice too.

I'm sorry you appear to have waited so long for a reply, especially as you are very distressed, but sometimes the moderation of new posters takes time.

Best Wishes

Sandra

We can't control the winds - but we can adjust our sails
User
Posted 23 Apr 2017 at 20:34

Hi Katie,

The most immediate and urgent thing is to relieve Dad's pain and to have an effective plan for this. Has medication been specifically prescribed for this and if so did it help at all even for some time? I see that Mum and Dad attended pain management at A&E but would have hoped for a proper follow up. HT is to help restrain the cancer which is another aspect and this may help slightly with the pain if the cancer skrinks but it is not a pain killer as such which which is really what Dad needs.

Barry
User
Posted 23 Apr 2017 at 21:54
So sorry to hear of your father's predicament. Can I suggest that you contact the PALS of you dad's hospital, they should act on it within 24 hours, also, have you got a local hospice? They are excellent in pain management. In theses days no one has to put up with pain and the hospice has the expertise to help
User
Posted 23 Apr 2017 at 23:10

Do you know where it has spread to Katie? If it is advanced and he has been told it is terminal but his bone scan was clear then they must have found spread in his liver, lungs or somewhere like that? As harsh as it seems, if he has indeed been told he is terminally ill then his care will not be led by an oncologist ... they usually get involved with cancer patients for whom there are still treatment options. 'Terminal' is usually used to refer to men who have such serious spread that they have no treatment options and will only be offered pain relief, and this is usually led by the local hospice team or Macmillan nurses.

So as horrible as this is for you and for dad, the referral to Macmillan (which it seems has already been done) is the most important thing and they are usually very good at getting the pain relief sorted out. It is very hard to get a balance between being in pain and being so drugged up that dad just sleeps all the time - the nurses should lead on this with dad's GP, not the hospital so I don't think a complaint to PALS would really help.

Macmillan will also be able to advise on how dad should go about claiming benefits. This money, available for people who are terminally ill, can be used to buy equipment that will make his life easier, or helps cover the cost of family members being off work to help care for him, or to pay for professional care / help in the house if and when he needs it.

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

 
Forum Jump  
©2024 Prostate Cancer UK