Chemo not working

Well confusion would be a complete understatement!!

I spoke to my mum yesterday who said that Dad was having a really bad day.  He had just about managed to stagger from his bed to the sofa and then had not moved.  He slept all day due to having lots of painkillers because of the continued pains in his leg.  She also dropped into conversation that we was finally discharged from hospital last Friday, he was given some paperwork to take with him.  Included in the paperwork was some type of scan report from his recent CT.  It stated that the disease had significantly progressed, so were of course, expecting the worst at his appointment with his Onco today.  Mum was lined up with her list of questions, ready to ask if there is anything else in the treatment cupboard and if not what this will mean for him etc.  She was dreading being told that he only had a certain amount of time left.

However, I had a quick call from her as they were coming out of the hospital today saying that everything is positive and that the consultant wants him to carry on with the chemo and that they will do another CT scan in August.  Obviously, this is just the most amazing news and as soon as I came off the phone from mum, I  just burst into happy, relieved tears.

Since calming down a little, I have begun to wonder what is going on.  If the cancer is getting worse then why are they continuing with the chemo.  Does that mean it's helping some mets and not others??  Still no firm explanation about the pains in his leg though, just something he has to put up with by the sounds of it.  The last guess was that a tumour was touching a nerve.  As I said, yesterday was a terrible day for him and today was the complete opposite, walking around, eating normally etc.

In conclusion, I can only imagine that this is extremely good news, albeit very unexpected.  

Rachel

ps - Thanks to Mo & Paul for pointing me in the right direction regarding the Elephants,  it was very informative and incredibly emotional.  Thank you so much for sharing your very heartfelt feelings.

Up lifting news Rachel, what ever is happening has made you feel good. http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-smile.gif

BFN

Julie X

And so the confusion continues!

Such a good day yesterday for dad.  He was up, walking around (with only 1 stick) and really happy in himself, obviously helped along by the good news that the chemo was going to continue.

However, today was a different day again.  He couldn't even get out of bed.  It was too painful to sit up and took a good 10-15 mins for my mum to help him to the bathroom for the toilet.  He has a lot of swelling from his hip down to his toes in his right leg and apparently a mass in his right buttock.

The hospice doctor went to see them today, had a good look at him, (which was more than the Onco did yesterday) and said that he thought Dad had an infection.  Mum was packed off to collect the antibiotics and they were told that if he is not better by tomorrow, then they should contact him again, so we shall wait and see what tomorrow brings.

Hi again everyone

Dad has now been on the antibiotics for a couple of days and as yet, no change at all with how he is feeling.  Mum has rung the hospice again today to see about getting a bed for him for a few days in order that they can hopefully get his pain under control.  Unfortunately, there are no beds available, they are going to review his case in the morning and contact mum again, so we will wait and see.  There's a lot of waiting and seeing on these journeys aren't there!!

Rachel

Mo is right, the antibiotics could be working, maybe it takes a little longer when one is already poorly. I sincerely hope the hospice can accommodate dad and I'm sure they will do their very best. It's very good to hear that the hospice doctor came out, that's better than the GP for this situation.

Thinking of you.

Lots of love

Allison xx

No I don't think you are being naive but I do think that you might find it helpful to talk to the staff at the hospice and get an understanding of what is in store.

The hospice staff will try not necessarily different meds to the GP, but will mess around with the combinations to find the best balance between pain control and zonkedness. Once they get the best balance, the patient would usually come home with a prescription or with a care plan for nurses to administer it at home, etc. It is not always possible to eradicate the pain completely - sometimes the hospice stay will only be for 3 or 4 days and a med that hasn't been tried before does the trick nicely.

This time at the hospice is important for you and mum as well - there will be a social worker or counsellor that can help with the emotional side of this stage that you are going in to, and if you haven't already done so, this is the right time to talk to an adviser there about any financial support that your parents may be entitled to now.

Dad was admitted into the hospice on Friday afternoon and was spoken to a lovely doctor and a couple of nurses that were very kind to him and made him feel comfortable about being there.

They upped his pain relief and he spent most of the day sleeping.  Unfortunately at the times I was awake , he was still in a lot of pain.  So much so, that another doctor has decided that he needs to have further investigations on the cause of his pain.  They mentioned that they plan for him to have some more scans and xrays.  Obviously I hope they find the cause of the pain so that they can deal with it, but it is annoying that he has been in so much pain for so long before they  have actually decided to do something, something that the hospital has failed to do as yet!!  He was very unwell yesterday and it took 2 nurses to get him out of bed to get to the bathroom.

It's very confusing as to why some days the pain is unbearable and painkillers don't touch it and other days he can be relatively comfortable and walking about.  There was mention of a possible fracture to his hip bone but I would like to think that this is not the case, the fact that he has been left so long but we shall have to wait and see when the scans and xrays and done.

Mum planned to go over and have Sunday lunch with him today so she was hoping to hear that he was feeling better.  At last, some good news, he phoned her to ask her to bring his sun hat over so that they could have their lunch out in the garden.  When she phoned me to tell me that, I put the phone down and burst into tears, but happy tears this time!!  So glad that he still having some good days :-)

Good news at last.  The hospice have been brilliant.  Not only have they got his pain pretty much under control as he is today having his 5th good day in a row, but they have also arranged for him to spend the day in hospital today having a huge cyst drained.  This is now the reason for them thinking that his leg has been so swollen and painful.  He his back in the hospice tonight with a drain still in, so let's hope this is what the problem has been all along and that he will feel much better soon.

Thank you everyone that has commented on this thread.  You have all really helped me through some very tough times.  I am now starting to feel more positive and am so relieved that dad is not in too much pain now.  Hopefully they might start talking about him going back home soon.

Rachel

Lots of love

Allison

Hi again.

I haven't been on for a while but am extremely pleased to say that since I was last on, the day that Dad had the cyst in his hip drained, he has made a full recovery.  Within a couple of days of having it drained, he was able to get out of bed and walk around (with supports).  Since then he has gone from strength to strength and is now walking around completely unaided. 

Myself, my family and my brother all went to visit him and mum for the weekend over Father's Day which was lovely.  It was so great to see him back to being happy and relaxed again, not that he ever gave him being strong and positive.

He had a follow up appointment yesterday with the Hospice doctor who was also very pleased with him, although did tell him for showing off walking about unaided!!  He has to keep using his stick in case of any falls.  He just wanted to show the doctor what an amazing recovery he has made.  It would appear that Dad was quite an unusual case and had an infection that they had not come across before.  So very impressed with the hospice, not so much with the hospital though :-(

Anyway, as things stand, although it's now been a couple of months, he is off to the hospital again tomorrow for his bloods, in preparation for his next round of chemo, so fingers crossed.

As I said before on my last post, thank you to everyone that helped me get through those very difficult weeks, it was so very much appreciated. 

Rachel