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In need of some support from someone who understands

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User
Posted 06 Jan 2016 at 15:00
Hi All,

I haven't been on here for such a long time.

Unfortunately things have got really bad for my dad.

After spending the summer in hospital, he had a really good few months on enzalutamide. He has detoriated quite badly over the last couple of months. At his last review his ids level had gone from 85 to 135 in 4 weeks. He had a couple of falls the week before Christmas and then was admitted in to hospital last week. He had a scan last week which showed the cancer had spread all the way up his spine. Yesterday we were called to the hospital and was told to get there as soon as we could. I was not prepared for how my dad was. He had had two brain seizures and was in a coma. His consultant came to see us. He told us he had seen the scan he had last week and his words were my dad was riddled with cancer and a very aggressive one at that. It had also spread in to his liver. He also told us my dad would not wake up from the coma and wouldn't make the end of the week. To our very surprise my dad came out of the coma wondering what all the fuss was about and why everybody was with him. He is going for a brain scan tomorrow to see what caused the seizures. Our guesses are one of two things, it is either compression on the brain as the cancer is in his skull and all the way down his spine or the cancer has spread to his brain. I have read that it is very rare for prostrate cancer to spread to the brain.

I wondered if anybody on here has come across this before?? this is completely heartbreaking and such a roller coaster of a ride xx

User
Posted 25 Jan 2016 at 18:28
As always you have all given wonderful support. From day one of finding this page you have all offered support. You all just get it which is a great comfort. I'm just sorry that everyone on this page has experienced the cruelty of this horrid disease in some capacity. Xx
User
Posted 07 Jan 2016 at 09:24
Dear Indigo

I was last year in a similar but different situation to you, in that my FIL came to visit us and was taken ill in hospital for 6 weeks. We have recently moved to an island and we have 2 small children. He was 90 and we were told that he was very close to death. For that period Dealing with the school runs, visiting him in hospital at set visiting hours and just daily life became very difficult, I fact impossible. My OH had to travel to UK for treatment for his PCa so I could not do it all. I ended up losing my car keys in the hospital car park with no one to call, later finding them under child seat, missing the visit and having no parking permit etc.

What I am trying to say is that you can't do it all every day. For your own safety you do have to share the load and that I do understand.

My miracle Dad recovered and was air ambulance to the UK to live at home for several weeks before he died.

I don't know how I did it looking back now, but I did, we do seem to get through.

I wish you strength.

Alison

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User
Posted 06 Jan 2016 at 15:48
Indigo

hello I have been wondering about you and your Dad and family.

I know that Dad was in such a bad way in the summer so thank goodness Enza seemed to give him at least a few more months of respite.

What has happened since is terribly sad, it is indeed quite rare for PCa to go to the brain, sadly it does happen as you are now experiencing. The brain scan will reveal the facts. Seizures can happen for other reasons including infections and as a reaction to some medications. However in light of the MRI results, the falling over and other things you have said I would prepare yourself for more bad news.

You will remember our previous conversations so you know I try to tell you things as honestly as I can.

Whilst there is life there is hope, your Dad has made several amazing turn arounds when things looked very bleak before. So enjoy every minute of the time you have with him, make sure you tell him how much you love him and for being the wonderful Dad he is. Be there with him not just for him.

There is sometimes a final period of lucid conversation and optimism in a person who is about to pass on, I like to think that is because they are ready. Maybe they have had a little glimpse of life on the other side, wherever that might be and it looks good. I certainly hope that is so.

Thinking of you and sending you a very big virtual hug, if you need to chat like before just message me I am here with you.

xxx

Mo

User
Posted 06 Jan 2016 at 16:12
Thank you Mo, I was hoping you would see my post.

My dads consultant on Monday was very blunt and certainly didn't mince his words but I guess they have to be clear in what they are saying. His words were dad is riddled and its aggressive so I think it's almost irrelevant what the scan shows. All the staff are extremely shocked how he came out of the coma so who knows why he has. I would like to think he just wasn't quite ready but we were told it won't be long. But he does keep surprising us but to be honest Mo as worried as I was back in the summer l, that was nothing compared to now. The Drs had always been positive but not anymore. They are not going to give dad anymore treatment xx

User
Posted 06 Jan 2016 at 16:54

Hello Indigo.

I am so sorry that the situation with your dad has deteriorated like this.

There isn't anything I can say to make you feel better, I just wanted you to know that I had read your post and I wish I could support you other than virtually.

You are in my thoughts and wishes for a peaceful passing when it happens.

Best Wishes
Sandra

We can't control the winds - but we can adjust our sails
User
Posted 06 Jan 2016 at 17:21

Hi Indigo
I remember posting to you in the summer and had realised you were missing in action.. My sentiments remain the same. I can only send true wishes your way , and please believe people on here are all thinking of you at this time, as we all sail the same ship
Chris x

User
Posted 06 Jan 2016 at 20:14

I am so sorry to hear this, Indigo. Priorities are for your Dad to be kept as comfortable and as free from distress as possible at this stage. I am thinking of you and send my love and support. I lost my partner in 2014, he also deteriorated very quickly and had aggressive disease. Nothing makes it easier for family, all you can do is take it a day at a time and be there for Dad, which you are clearly doing.

 

Fiona x

User
Posted 06 Jan 2016 at 20:28

Hi Indigo, so very sorry that you are at this stage with your dad. My thoughts are with you at this time as there is nothing that I can say or do in any other way to help, Mo and the others have said what needs to be said, spend as much quality time with you dad as every moment will be a memory, treasure what you can

My prayers are with you.

Regard Chris/Woody

Life seems different upside down, take another viewpoint

User
Posted 06 Jan 2016 at 20:41
Hi,

My dad had his scan today. The cancer hasn't spread in to his brain but because the cancer has got s lot worse the cancer in the skull and spine are causing compression of the brain. He already had compression of the spinal cord at the base of his back.

I just feel lost as to what to do, Monday we were called in saying he wouldn't last the dsy, today he is sat up in bed having a half decent conversation. As happy as we are that he pulled through, we know it will most likely happen again and if not that it will be something else. I feel a complete nervous wreck. Im trying to balance being there with my dad as much as I possibly can and also be there for my three young children and living an hour away which I know probably isn't a long way but it is when you want to be with someone as much as you can.

My mum and siblings don't want to ask the question how long has dad got left but I feel like I need to know although I think deep down I already know. Also Monday certainly showed us that it can happen as quick as anything

Just feel so desperately heart broken xx

User
Posted 06 Jan 2016 at 21:18

Hello indigo,

The medics got it wrong about the anticipated time of your Dad's passing but as you are aware, sadly his situation means his time is fast running out. As no further treatment can be given, the priority is to make him comfortable and minimize pain. It is difficult for you with your family responsibilities and location to be able to spend so much time with him as you would both wish but I am sure he understands this. A desperately unhappy time for the family. We empathize with you.

Barry
User
Posted 06 Jan 2016 at 22:15
Hello Indigo

Just popped in and saw your post. I'm desperately sad for you and your family. Mo has given great advice as always. We had a similar position with our parents, long way away and never quite knowing when the end was near. You have my sympathy, all you can do is your best to be with him as much as is reasonable as you have a young family. He will understand.

My thoughts are with you and your lovely dad

Love Allison cxx

User
Posted 07 Jan 2016 at 06:05

hi indigo
just like to add myself to list of support, cant think of anymoe to add

regards
nidge

run long and prosper

'pooh how do you spell love'

'piglet you dont spell love -you just feel it'

User
Posted 07 Jan 2016 at 09:13

Hello Indigo.

Just to say I'm thinking of you all. Much as you love your dad, you can only do so much especially bearing in mind the distance involved, and you also have the care and responsibility of a young family to consider.

You know your own dad best, ask yourself what (before he was at the level he is now and was able to have a proper conversation with you,) he would be saying to you now if you expressed your distress about not being there to look after him.

I bet he would be saying not to worry about him so much and to think of the children. Loving, caring Dad's are like that !

I hope you are also looking after yourself x

We can't control the winds - but we can adjust our sails
User
Posted 07 Jan 2016 at 09:24
Dear Indigo

I was last year in a similar but different situation to you, in that my FIL came to visit us and was taken ill in hospital for 6 weeks. We have recently moved to an island and we have 2 small children. He was 90 and we were told that he was very close to death. For that period Dealing with the school runs, visiting him in hospital at set visiting hours and just daily life became very difficult, I fact impossible. My OH had to travel to UK for treatment for his PCa so I could not do it all. I ended up losing my car keys in the hospital car park with no one to call, later finding them under child seat, missing the visit and having no parking permit etc.

What I am trying to say is that you can't do it all every day. For your own safety you do have to share the load and that I do understand.

My miracle Dad recovered and was air ambulance to the UK to live at home for several weeks before he died.

I don't know how I did it looking back now, but I did, we do seem to get through.

I wish you strength.

Alison

User
Posted 24 Jan 2016 at 09:54
Morning All,

Just wanted to let you all know I lost my daddy yesterday. He had suffered so badly and it was time for him to let go which he did and died peacefully at 12.05 yesterday morning

I am broken beyond words

I am so very grateful to have had all your support when I needed the support from people who knew what I was going through.

I just hope one day I will be able to remember my daddy for he used to be and not the daddy that died suffering

Truly heartbroken xxx

User
Posted 24 Jan 2016 at 10:49
Dear Indigo,

I am so very sorry to read this my heart aches for you, at least your Dad is no longer in pain. I will be thinking of you and your family.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 24 Jan 2016 at 10:53

Oh Indigo.
So sorry for you and family. I can feel how broken you are. All those good memories will come back I promise. Will be thinking of you today
Chris xx

User
Posted 24 Jan 2016 at 11:19

hi indigo
sorry to read this you are in my thoughts
regards
nidge

run long and prosper

'pooh how do you spell love'

'piglet you dont spell love -you just feel it'

User
Posted 24 Jan 2016 at 11:21

So sorry , but not unexpected. As you mention, probably the worse thing is to see a loved one deteriorate over the course of the disease. I send my love and condolences.

 

Fiona. xx

User
Posted 24 Jan 2016 at 13:31

Dear Indigo,
Dad may be gone (and no longer in pain and confusion) but what you have left, to treasure and keep for always, is the loving bond you had with him.

He will understand that you grieve but I'm sure he loved you enough to say, "Remember me as I was and what we shared, rather than the last months, and whilst remembering me also remember I love you and want you to be happy."

It is so hard for you now but the pain will lessen, little by little.

Look after yourself and your family

We can't control the winds - but we can adjust our sails
User
Posted 24 Jan 2016 at 13:36
Indigo

So sorry to hear of your loss,remember the happy times, I am sure that is what your dad would want.

Thinking of you.

Thanks Chris

User
Posted 24 Jan 2016 at 13:45

Indigo, my mum had an horrific drawn out death but when I remember it now, what I remember is how peaceful she looked in the last minutes, and then I remember funny and happy things that happened in our lives - to respond to posts like yours I have to make an effort to remember the horrible bits because they are not at the front of my mind. Time is a wonderful thing and you will get there, I promise - maybe not in the next few weeks and months but eventually you will remember him and feel happy that he was so loved.

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

User
Posted 24 Jan 2016 at 15:00

My condolences. The sad memories uppermost in your mind at present will fade over time and you will remember and treasure the happy times.

Barry
User
Posted 24 Jan 2016 at 16:16
Indigo

I am so very sorry for your loss, your Dad was very blessed to have a wonderful and truly caring daughter like you.

The love you have for him will never fade but as Lyn has so eloquently said, with time the memory of the pain and suffering will. Then all your memories will be the happy ones.

The coming days will be really hard for you and your Mum and your family as you prepare for his funeral. For me it was almost 3 weeks of blank days so many things to do and anxiety about every single one of them. My family and friends were amazing. There was nearly always someone with me unless I specifically asked to deal with something alone.

The people you have here on the forum will be here whenever you need to chat or even just for you to share how you are feeling.

I send you a very big hug and thank you for being such a wonderful daughter for your parents to be proud of.

XXX

Mo

User
Posted 24 Jan 2016 at 16:27

Indigi, please accept my condolences for your sad loss, even though it was not unexpected It must be totally devastating for you.

Take all the good memories that you have of him and store them in your heart and remember him as you knew him and not how pain and this terrible disease made him.

My thoughts are with you

Regards and best wishes Chris/Woody

Life seems different upside down, take another viewpoint

User
Posted 24 Jan 2016 at 16:50
Indigo

Sorry for your loss even although it was expected its just as hard on us.

My thoughts are with you and family.

User
Posted 24 Jan 2016 at 17:35
I am sorry to hear about the loss of your dad.

You have been a wonderful daughter to him. I have no doubt how proud he was of you. Being the father of a girl I know from experience the bond there is between a dad and a daughter. It is easy for me to say but I do feel your pain.

Thinking of you at this very sad time.

User
Posted 24 Jan 2016 at 21:17
Dear Indigo

I'm so sorry for your loss. I can only echo Lyn's words, for some time after my dad died I could only see his face at the end (not something I care to remember). But after a while, my vibrant, loving, tall (he wasn't really but he was to me) amazing dad came back to me. I was so grateful for that, I'm sure it will happen to you too. I can hear his voice and see his lovely face and it makes me happy.

With sincere condolences

Allison xx

User
Posted 24 Jan 2016 at 22:12

Indigo,

Words are inadequate. I'm so sorry.

David

User
Posted 25 Jan 2016 at 18:28
As always you have all given wonderful support. From day one of finding this page you have all offered support. You all just get it which is a great comfort. I'm just sorry that everyone on this page has experienced the cruelty of this horrid disease in some capacity. Xx
 
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