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The journey has begun

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User
Posted 02 Dec 2016 at 10:31

This is my first posting although I have been following conversations for a few months and want to thank you all for your honesty and humour which have been a great help and comfort to me.  The reason for posting today is that my OH half started on Radium 223 two weeks ago having gone through all other treatments (see my profile).   I know there is very little known about Radium 223 and thought a little input from myself might help I know Trevor is about to embark on this journey.  


My OH was having pain in arms, shoulders and legs prior to treatment.  The treatment was just an injection into the hand which only took a minute or two.  He was warned that there could be a spike in the pain and this has proved to be the case although it is being controlled with slow release morphine and Gabapentin.  Apparently the PSA is of no consequence now and I think the reading they look for is the ALP.  He is due to have the next injection on 13th December with bloods taken the day before.  


We have a Macmillan nurse visiting and have a wonderful service from our GP.  


 


Thank you all once again,


 


Molly 

User
Posted 02 Dec 2016 at 10:31

This is my first posting although I have been following conversations for a few months and want to thank you all for your honesty and humour which have been a great help and comfort to me.  The reason for posting today is that my OH half started on Radium 223 two weeks ago having gone through all other treatments (see my profile).   I know there is very little known about Radium 223 and thought a little input from myself might help I know Trevor is about to embark on this journey.  


My OH was having pain in arms, shoulders and legs prior to treatment.  The treatment was just an injection into the hand which only took a minute or two.  He was warned that there could be a spike in the pain and this has proved to be the case although it is being controlled with slow release morphine and Gabapentin.  Apparently the PSA is of no consequence now and I think the reading they look for is the ALP.  He is due to have the next injection on 13th December with bloods taken the day before.  


We have a Macmillan nurse visiting and have a wonderful service from our GP.  


 


Thank you all once again,


 


Molly 

User
Posted 03 Dec 2016 at 09:39

Thank you Molly.
This last injection has been the worse one for Trevor ,increase in pain and feeling lethargic .
Take care Carol xx.Harmony sending you our best wishes .

User
Posted 13 Jan 2017 at 10:17

Molly I am so very very sorry to see your update. Sometimes the change from treatment to end stage is dramatic and with bells ringing but in other cases the person we love just slips gently from one to the next. It seems Mike is aware that these are his last days and weeks and even now is thinking of you and your needs as well as his own. All you can do is keep talking, say all the things that are in your heart, chat about happy times in the past ... store up lots of memories that will comfort you in the future. We talk about the comfort blanket a lot on here but the best comfort blanket is having nothing left unsaid.

Don't forget to take care of yourself while you are looking after everyone else - the last thing mike needs is you in a crumpled heap of exhaustion.

You are in my thoughts x

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 01 Feb 2017 at 06:53

I thought by now I would be writing with sad news given how poorly Mike was when he entered the Hospice but it is quite the opposite. I am not going to lie it's not been all beer and skittles he had terrible hallucinations and delirium on the medication and a urine infection. I stayed over with him most nights as he was fretful through the night and agitated. The doctors and nurses have been wonderful and eventually tweaked the medication to find exactly what suited him and the difference is remarkable. I have my old Mike back he is weaker but his sense of humour and mischief is back and it's wonderful to hear the laughter coming from his room he has such a carry on with the staff. I can honestly say we are having quality time together now which is wonderful for all the family. Feeling blessed with love

Molly xxx

User
Posted 02 Dec 2016 at 14:04

Hello Molly and belated welcome from me.

I have been reading through your profile and see what a tough journey your man has had, which also means so have you.

I'm glad that you've found us and find being here a comfort as you continue on this journey.

My very best wishes to you both

Sandra

****

We can't control the winds - but we can adjust our sails
User
Posted 02 Dec 2016 at 20:29

My husband also on Radium 223,he is also called Trevor.He also had a lot of pain had to take morphine ,psa sky high but Alp
dropped .He will be having his 5th injection due next week .psa 3850 Alp149. His taste changed just like when he was on chemo.Trevor been fighting now for 11years ,had most treatments including chemo 3 times and trial at the Royal Marsden in London .Would love to hear from you .Thank you .

User
Posted 03 Dec 2016 at 08:46
Hi molly
Sorry to see of your husbands struggles. This is such a fab site with many lovely people.
Radium 223 may soon be our next option, wishing your hubby all the best and hope the side effects of pain settle for him.
Take care.
Lesley xx
User
Posted 07 Dec 2016 at 20:01
Hi Molly,
Thank you for posting this , so 2 Trevor's and 3 lots of Raduim going on (it's going to be a busy Xmas) . We start on the 13th (just hoping that's not a Fri).
It's a difficult journey isn't it but made easier with others to share it with.
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON
User
Posted 07 Dec 2016 at 20:15

Good luck for the 13th.Trevor hopefully will have his 5th Radium on the 13th no thankfully not a Friday .Take care Carol xx

User
Posted 07 Dec 2016 at 22:54

Gosh Mike has his second radium on the 13th pity it's not at the same hospital we could have had a Christmas party! It is a difficult journey Julie but so many people have difficult journeys I met with a friend today whose husband has just been diagnosed with motor neurone disease, it's tragic but we still managed a good laugh thank god for a sense of humour and friends. I will be thinking of the two Trevor's on Tuesday. Take care

Molly xx

User
Posted 26 Dec 2016 at 22:58

Well it's been an eventful two weeks. Mike did go into the Hospice and they were wonderful. It was such a relief to have somebody else who New exactly what they were doing looking after him. They soon had his medication tweaked and his pain controlled. He was discharged on Thursday and I was given a chart detailing just what he was to have medication wise and times to administer. He is still very tired and weak but much better than before he went into the Hospice. I don't know what is going to happen about his next radium treatment how long it can be postponed etc we hope to speak to the oncologist after the Christmas break.

I hope you have all managed to make happy memories this Christmas

Molly xx

User
Posted 13 Jan 2017 at 06:18

Mike spoke with the oncologist he rang us at home he wasn't well enough to make the journey for the treatment but the oncologist said he would keep the option there for him. Our GP switched his medication to a syringe driver which meant it is being administered constantly. He is sleeping a lot more and it has been a struggle to get him up and into a chair. We have a bed downstairs which was provided by Macmillan. The decision was made on Tuesday to go back to the Hospice it was very hard to make the decision as he had said he wanted to end his days in the Hospice and didn't want to be going in and out. I met Mike when I was seventeen and married at nineteen we will have been married fifty years in March I feel so sad and can't imagine life without him. Our children two sons and two daughters have been wonderful and a great support to us as have there partners so I know I am very fortunate. I know Mike is in the best place and I can now spend quality time with him however long that may be.

Molly xx

User
Posted 13 Jan 2017 at 19:53

Dear Molly,


I'm so sorry to read your latest post. You are in my thoughts and I hope the Hospice will make the coming days as calm and peaceful as possible for you both.


David

User
Posted 13 Jan 2017 at 20:57

I'm so sorry to read this Molly. At least Mike is in good hands and hopefully you will be able to focus on just spending time with him. Do look after yourself.


Big hugs


Rosy xxx

User
Posted 13 Jan 2017 at 21:19
Dear Molly
I am so sorry that you are facing this. I hope the next few days and weeks can be as calm and peaceful as possible for you both x
User
Posted 13 Jan 2017 at 21:34

Molly
My thoughts are with you both and all the family. I hope there is time ahead that can be treasured whilst also obviously very sad. Sending strength.
Chris


If life gives you lemons , then make lemonade
User
Posted 14 Jan 2017 at 10:16
Oh Molly I am so sorry to read this. I will be thinking of you Mike and your children. There are never the right words to say so I won't try but just wanted you to know that myself and everybody here are behind you.
Take care
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON
User
Posted 14 Jan 2017 at 12:42

So sorry Molly. Thinking of you and sending much love.


Eleanor


x

User
Posted 18 Jan 2017 at 19:51
Oh Molly your words have struck such a Cord with me ( a week ago I was stressing about wether I was giving the care he needed and deserved) . I felt this when Trevor was so poorly before Xmas I was trying to sort the puppies /dogs / children and everything else and was literally running from one room to another.
Every body and every circumstance is different but for me when the time comes I would want Trevor to be in the hospice so as you have said we can spend quality time together .
Much love being sent your way.
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON
User
Posted 01 Feb 2017 at 06:52

I thought by now I would be writing with sad news given how poorly Mike was when he entered the Hospice but it is quite the opposite. I am not going to lie it's not been all beer and skittles he had terrible hallucinations and delirium on the medication and a urine infection. I stayed over with him most nights as he was fretful through the night and agitated. The doctors and nurses have been wonderful and eventually tweaked the medication to find exactly what suited him and the difference is remarkable. I have my old Mike back he is weaker but his sense of humour and mischief is back and it's wonderful to hear the laughter coming from his room he has such a carry on with the staff. I can honestly say we are having quality time together now which is wonderful for all the family. Feeling blessed with love

Molly xxx

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User
Posted 02 Dec 2016 at 14:04

Hello Molly and belated welcome from me.

I have been reading through your profile and see what a tough journey your man has had, which also means so have you.

I'm glad that you've found us and find being here a comfort as you continue on this journey.

My very best wishes to you both

Sandra

****

We can't control the winds - but we can adjust our sails
User
Posted 02 Dec 2016 at 20:29

My husband also on Radium 223,he is also called Trevor.He also had a lot of pain had to take morphine ,psa sky high but Alp
dropped .He will be having his 5th injection due next week .psa 3850 Alp149. His taste changed just like when he was on chemo.Trevor been fighting now for 11years ,had most treatments including chemo 3 times and trial at the Royal Marsden in London .Would love to hear from you .Thank you .

User
Posted 02 Dec 2016 at 22:50

Thank you Sandra and Quantum, it makes such a difference to be able to share the ups and downs of this journey with people who totally understand. Quantum my OH was diagnosed two and a half years ago and has only had one lot of chemo. At our last visit to the oncologist he was told that radium 223 would be the last treatment, we live in Scotland. He hasn't mentioned any change in taste maybe that is yet to come as it's very early days. I hope all goes well for Trevor next week.

User
Posted 03 Dec 2016 at 08:46
Hi molly
Sorry to see of your husbands struggles. This is such a fab site with many lovely people.
Radium 223 may soon be our next option, wishing your hubby all the best and hope the side effects of pain settle for him.
Take care.
Lesley xx
User
Posted 03 Dec 2016 at 09:39

Thank you Molly.
This last injection has been the worse one for Trevor ,increase in pain and feeling lethargic .
Take care Carol xx.Harmony sending you our best wishes .

User
Posted 07 Dec 2016 at 20:01
Hi Molly,
Thank you for posting this , so 2 Trevor's and 3 lots of Raduim going on (it's going to be a busy Xmas) . We start on the 13th (just hoping that's not a Fri).
It's a difficult journey isn't it but made easier with others to share it with.
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON
User
Posted 07 Dec 2016 at 20:15

Good luck for the 13th.Trevor hopefully will have his 5th Radium on the 13th no thankfully not a Friday .Take care Carol xx

User
Posted 07 Dec 2016 at 22:54

Gosh Mike has his second radium on the 13th pity it's not at the same hospital we could have had a Christmas party! It is a difficult journey Julie but so many people have difficult journeys I met with a friend today whose husband has just been diagnosed with motor neurone disease, it's tragic but we still managed a good laugh thank god for a sense of humour and friends. I will be thinking of the two Trevor's on Tuesday. Take care

Molly xx

User
Posted 11 Dec 2016 at 15:57

Well what a few days, my OH slept most of Thursday and Friday in my innocence I thought at least if he is sleeping he is not in pain. I woke him at 4.30 on Friday afternoon with a drink and to say our daughter was due to visit from down south and he insisted on getting up and dressed, but what a struggle it was he was so weak with pains in his legs and a jerking movement in his arms, but managed to get him dressed and down stairs. At 5.45 I rang our GP for advice and she came round gave him a full examination and rang the oncology department at our hospital. They wanted him in that night for bloods etc. We took him up to the hospital (an hours drive) and they were wonderful he was kept in for tests (I must admit I was thinking MSCC and couldn't understand why the experts at a cancer hospital couldn't see it). Saturday morning I got a phone call from my OH I couldn't believe the change in him he was much better. I went to visit in the afternoon and one of the consultants came to speak to us. They had reduced some of his medications and were going to do a scan of the skull, he got up and walked round the room the change was unbelievable. He should be getting out tomorrow Monday and is due to have a second Radium 223 on Tuesday (watch this space)! My two sons are visiting this afternoon and I am going this evening with my other daughter who lives locally, I am very lucky with the support from my children and friends.

Molly xxx

User
Posted 11 Dec 2016 at 18:04

Gosh it's always such a rollercoaster. Very interesting to read about radium 223. I am not there yet but one day it will be an option. My oncology department were heavily involved in the trials and they like it as a drug. I do ho-edit has positive impact for your OH and that he gets some pain relief. Will be watching your posts for good news

User
Posted 13 Dec 2016 at 17:47

Unfortunately Mike didn't have his Radium 223 treatment today as he couldn't face the journey back to the hospital having only been discharged on Sunday night. It has been postponed for two weeks. He is extremely tired sleeping most of the time there is talk of him going to the hospice for pain management. It such a worry.

Regards Molly xxx

User
Posted 13 Dec 2016 at 21:10
Oh Molly,
It seems we are on the same roller coaster not sure about you but I want to unbuckle and get off.
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON
User
Posted 13 Dec 2016 at 22:34

I know exactly what you mean Julie, when the kids were young and we took them to theme parks Mike would always go on the white knuckle rides, I was a scaredy cat the log flume was my limit, I've no choice with this one. I hope Trevor got on alright today and doesn't have any reaction.

Take care

Molly xx

User
Posted 26 Dec 2016 at 22:58

Well it's been an eventful two weeks. Mike did go into the Hospice and they were wonderful. It was such a relief to have somebody else who New exactly what they were doing looking after him. They soon had his medication tweaked and his pain controlled. He was discharged on Thursday and I was given a chart detailing just what he was to have medication wise and times to administer. He is still very tired and weak but much better than before he went into the Hospice. I don't know what is going to happen about his next radium treatment how long it can be postponed etc we hope to speak to the oncologist after the Christmas break.

I hope you have all managed to make happy memories this Christmas

Molly xx

User
Posted 13 Jan 2017 at 06:18

Mike spoke with the oncologist he rang us at home he wasn't well enough to make the journey for the treatment but the oncologist said he would keep the option there for him. Our GP switched his medication to a syringe driver which meant it is being administered constantly. He is sleeping a lot more and it has been a struggle to get him up and into a chair. We have a bed downstairs which was provided by Macmillan. The decision was made on Tuesday to go back to the Hospice it was very hard to make the decision as he had said he wanted to end his days in the Hospice and didn't want to be going in and out. I met Mike when I was seventeen and married at nineteen we will have been married fifty years in March I feel so sad and can't imagine life without him. Our children two sons and two daughters have been wonderful and a great support to us as have there partners so I know I am very fortunate. I know Mike is in the best place and I can now spend quality time with him however long that may be.

Molly xx

User
Posted 13 Jan 2017 at 10:17

Molly I am so very very sorry to see your update. Sometimes the change from treatment to end stage is dramatic and with bells ringing but in other cases the person we love just slips gently from one to the next. It seems Mike is aware that these are his last days and weeks and even now is thinking of you and your needs as well as his own. All you can do is keep talking, say all the things that are in your heart, chat about happy times in the past ... store up lots of memories that will comfort you in the future. We talk about the comfort blanket a lot on here but the best comfort blanket is having nothing left unsaid.

Don't forget to take care of yourself while you are looking after everyone else - the last thing mike needs is you in a crumpled heap of exhaustion.

You are in my thoughts x

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 13 Jan 2017 at 19:53

Dear Molly,


I'm so sorry to read your latest post. You are in my thoughts and I hope the Hospice will make the coming days as calm and peaceful as possible for you both.


David

User
Posted 13 Jan 2017 at 20:57

I'm so sorry to read this Molly. At least Mike is in good hands and hopefully you will be able to focus on just spending time with him. Do look after yourself.


Big hugs


Rosy xxx

User
Posted 13 Jan 2017 at 21:19
Dear Molly
I am so sorry that you are facing this. I hope the next few days and weeks can be as calm and peaceful as possible for you both x
 
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