Indigo
hi, I wish you had private messaged me as I would have got an e amil to let me know you needed something, I have been away for 24 hours so I really am sorry I missed you last night.
Ok so you know I am quite forthright and would never intentionally mislead you so here is my take on what is happening with your Dad. I can try and put this into non medical jargon hoping it makes it easier for you to uderstand and relate to.
The first thing is that no spread to any vital organs is good, very good
the second thing is that the scans have shown that your Dad is probably having a spinal cord compression or SCC, I mentioned this condition to you on an earlier reply. This is quite common for men with prostate cancer where the cancer has spread into the spine. There are 3 main areas this can effect and each has different symptoms and outcomes. It sounds as though your Dad has his in the lower to mid lumbar region ie down low in his back. This would cause weak legs and difficulty walking, it is also incredibly painful as the tumour/s press against the nerves inside the spinal cord. The other two most likely areas for this are in the mid to upper back and the lower neck. It does not sound as though that is the case for your Dad so we can skip those for now. It is a very serious condition, indeed if left untreated in can cause paralysis and all that goes with that and in really severe cases even death.
Thankfully the hospital team must have partly guessed this and ordered all the tests to prove their thinking. That will be why they have stopped the enzalutamide for now as your Dad needs to undergo some fairy intensive treatment that is both physically and mentally taxing so he needs all his strength for that.
The normal course of action will be to immobilse your Dad as much as possible by telling him he has to stay flat on his back with no raising of the bed at all, this can be for 10 days or more and it is really hard for a patient. If you can imagine only being able to view the world from one aspect you get a bit of a fixation on any lights or marks on the ceiling. Also trying to eat or drink flat on your back is really hard, we have to be trained just how to feed a patient in that prone position. You and your Mum might like to get one of the nurses to show you how so that you can help at meal times. Also Dad will recognise your voices but will not be able to see your face so when you visit make sure you go close up and give him a kiss so he can look at you.
The next thing will be that he will have a lot of things done for him in terms of washing etc. he will be able and allowed to help with things like washing his face and hands, brushing his teeth etc. and maybe shaving, if he has been used to doing that all for himself and in his own bathroom then this change can be a bit frustrating.
Your Mum will be allowed to help if that is what she and your Dad want. Just to bear in mind this is a completely unnatural position to be in for so long, it is really hard so anything to relieve the boredom is good. Radio better than TV and having people around to stop him from trying to sit up a bit also helps. As treatment progresses he will slowly be allowed to sit up just a little tiny bit at a time though.
His treatment will start immediately with what is called an RT planning session the Radiology team will have your Dad slid onto the scanner bed so that they can pinpoint the exact areas that need treating, this is all done with very advanced computer imaging and the scans that were done earlier this week. They will mark up points on his body where the RT beams need to be focused these marks are called tatoos but they are really made with a special marker pen and dye unlike ink tatoos they do fade away with time. Indeed when washing or being washed the area of these marks will be avoided so as not to erase them at all. There may be 2 or more of these and they look a bit like a target cross.
Next stage is for probably 5 doses of Radiotherapy one done every day for 5 days.
This is a painless procedure albeit the movement and transfer will be very uncomfortable for your Dad so he may be given extra pain medication to achieve this.
He will also probably be fitted for a specialist back brace for after the RT, these look really uncomfortable but I am assured that they really feel great and are very supportive during recovery from this kind of problem. This will be worn whenever Dad is going to be moved until such time that the medical team are happy that he no longer needs it. This could be weeks it could be months and in some rare cases needed indefinitely.
Once again the good news is that it sounds as though your Dad had this picked up in good time so there may not have been any spinal compromise. If all the RT goes well and Dad responds positively to it then with lots of Physiotherapy and a great deal of patience he should be back on his feet again in a few weeks maybe even less.
Once you know how things are progressing I will be here to answer any questions you might have.
Dad may also have his medication changed a little with a new pain medication that specifically targets nerve pain being added maybe a drug called Lyrica.
He will be very tired, possibly a bit grumpy, possibly off his food (though you should encourage him to eat or use the high protein drinks the hospital will provide) so just be patient with him.
As for hospice, hospital or at home when the time comes, we can talk about that when and if it becomes necessary right now you focus on looking after your Mum who has bottled all this fear and anxiety up probably to help protect you, and of course your Dad.
You sound such a lovely lass so thankyou for caring so much to be posting here.
I hope this is not too much onformation for you all in one go
I will be thinking of you
best wishes
xx
Mo
Edited by member 18 Jul 2015 at 21:01
| Reason: Not specified