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User
Posted 19 Feb 2018 at 20:09
Hello all,first time i have posted on here,but i have been looking at posts for a year now for information on prostrate cancer.my lovely husband passed away yesterday at the age of 57 and i feel the need to write his story,maybe it will help other members.
My husband was diagnosed nov 2016 after 3 years back and forth to doctors with pain in back groin down his legs etc he had a endoscopy and removed a large polyp,we thought that was causing the pain but after he still had same pains,so back to docs again had testicle scans rectum examination nothing found,had back xray nothing,so said he could have a pain injection,while waitng for appontment for 3 months,he went to docs for blood tests and they gave hin psa test it came back at 117 more scans done find it is in bones,started zoladex implants then after xmas docetaxel chemo until june.so happy psa went to undetectable,he had a physical job and worked all through chemo.went onholiday in july apart from some pain in legs he was quite well,by october he was getting more pain and his psa had gone back up to 100 another psa before xmas 2017 it had gone to 250.oncologist said to wait till after xmas and he could go on to a new treatment hormone or chemo in the meantime he gave him casodex,he was taking this for 2 weeks when he became breathless so i phoned the helpline and was told it was one of the side effects and to carry on with them,another he was self employed and had to give up work couldn,t walk due to breathlessness and pain in legs arms back,saw a lung specialist and told it was suspected pneumonitis prob caused by casodex.so was put on 30mg predisone daily so then more side effects sugar levels hit the roof he was already diabetic just on tablets had to go on insulin when he started chemo,his stomach was bruised and swollen and painful to inject insulin,he was so depressed sitting at home all day never had a day off sick in 40 years it was so sad,he was on so many pain killers as well,yesterday morning he woke at 3 his legs had swollen and had low temp.i phoned ambulance,At the hospital he had bloods done etc,and was in so much pain,they said they wanted to do a scan,so me and my son and daughter went to cafe,when we returned half hour later he had gone,doc said he asked for cup of tea sat up then said he felt strange lay back down and passed away,we were so sad we were not there,but glad to know he went quickly and his pain was finally gone,he just couldn,t go on anymore,
We just wish he had a psa test sooner,it never even entered my mind it could be prostrate cancer at the begining until reading all about after being diagnosed,my son is 33 now and i think he should have the test now as his uncle and grandad both have the disease as well,
Sorry if i have rambled on,just need to get it off my chest,
User
Posted 19 Feb 2018 at 20:09
Hello all,first time i have posted on here,but i have been looking at posts for a year now for information on prostrate cancer.my lovely husband passed away yesterday at the age of 57 and i feel the need to write his story,maybe it will help other members.
My husband was diagnosed nov 2016 after 3 years back and forth to doctors with pain in back groin down his legs etc he had a endoscopy and removed a large polyp,we thought that was causing the pain but after he still had same pains,so back to docs again had testicle scans rectum examination nothing found,had back xray nothing,so said he could have a pain injection,while waitng for appontment for 3 months,he went to docs for blood tests and they gave hin psa test it came back at 117 more scans done find it is in bones,started zoladex implants then after xmas docetaxel chemo until june.so happy psa went to undetectable,he had a physical job and worked all through chemo.went onholiday in july apart from some pain in legs he was quite well,by october he was getting more pain and his psa had gone back up to 100 another psa before xmas 2017 it had gone to 250.oncologist said to wait till after xmas and he could go on to a new treatment hormone or chemo in the meantime he gave him casodex,he was taking this for 2 weeks when he became breathless so i phoned the helpline and was told it was one of the side effects and to carry on with them,another he was self employed and had to give up work couldn,t walk due to breathlessness and pain in legs arms back,saw a lung specialist and told it was suspected pneumonitis prob caused by casodex.so was put on 30mg predisone daily so then more side effects sugar levels hit the roof he was already diabetic just on tablets had to go on insulin when he started chemo,his stomach was bruised and swollen and painful to inject insulin,he was so depressed sitting at home all day never had a day off sick in 40 years it was so sad,he was on so many pain killers as well,yesterday morning he woke at 3 his legs had swollen and had low temp.i phoned ambulance,At the hospital he had bloods done etc,and was in so much pain,they said they wanted to do a scan,so me and my son and daughter went to cafe,when we returned half hour later he had gone,doc said he asked for cup of tea sat up then said he felt strange lay back down and passed away,we were so sad we were not there,but glad to know he went quickly and his pain was finally gone,he just couldn,t go on anymore,
We just wish he had a psa test sooner,it never even entered my mind it could be prostrate cancer at the begining until reading all about after being diagnosed,my son is 33 now and i think he should have the test now as his uncle and grandad both have the disease as well,
Sorry if i have rambled on,just need to get it off my chest,
User
Posted 22 Feb 2018 at 17:20
Thanks everyone for your messages,
After phone calls back and forth to coroner,finally got the cause of death as progressing pneumonia and high grade prostrate cancer,
As my husband was always cheerful and full of banter in front of others including docs,no one realised how ill he really was including myself really,i used to think once he goes on this medication he will feel better etc etc,and he wasn,t one to keep asking doctors for help with pain etc.
Also because we never asked how bad it was or to see scans we were not expecting it.
I take comfort that he is not in pain anymore.
User
Posted 23 Feb 2018 at 08:31

I think your story mirrors mine in some respects. Cheerful and full of banter is exactly how my late husband dealt with family and doctors. Although I had been aware how bad things were we didn’t talk about it and I realised afterwards that Mike knew too and it was just too painful for him to discuss openly.

We were always looking for the next solution, indeed until the day he died he had hope of better times ahead. Over the years I have gained comfort from this and sincerely hope you do in addition to the comfort of him not being in pain anymore.

This new life is still very, very new for you. Take care of you, Janet, x

User
Posted 19 Feb 2018 at 23:04

Bluebell


So sorry to read your story.  I hope your happy memories give you some comfort as the days go by.


Ulsterman

User
Posted 19 Feb 2018 at 23:37

Oh Bluebell, I am so sad for you. All those people who say things like "it's an old man's disease" and "it's the best cancer to get" should be made to read your story. We do lightly say to people that most breeze through the chemo but as you have found, the complications can be very serious.

It may be a little bit too soon for your son to start being PSA tested but certainly from the age of 40 he should insist even if his GP isn't keen. You have a lot to do and sort out at the minute but perhaps in a few weeks or months, you could talk to your son about whether he might want to see a genetics specialist. Only a tiny number of prostate cancers are genetic (about 5% - 10%) but the fact that your husband was young and the cancer was so aggressive might make it worth doing.

You and your family are on my mind tonight.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 20 Feb 2018 at 07:24

Woke up today to read this , and as a young man myself my thoughts go out to you all. Thinking of you x

User
Posted 20 Feb 2018 at 08:48
Bluebell

So sorry to hear of your loss, please accept my sincere condolences.

Thanks Chris
User
Posted 20 Feb 2018 at 09:18

Dear Bluebell and family

I was so sorry to see your post and I was also very sad that you didn't approach us sooner.

We may not have been able to predict the outcome or give much advice but what we could have done (and what we are doing now) is to offer you support and a shoulder to lean on.

It was also sad that you weren't with him at the end, but maybe he would have preferred you to be that one step further back so that he could pass in peace and without stressing that you would suffer watching him go.

All the old platitudes (time will heal etc.) don't exactly help at the moment but eventually you will be able to look back and remember the happier times and the joy he brought you all.

I am thinking of you

Sandra X

We can't control the winds - but we can adjust our sails
User
Posted 20 Feb 2018 at 09:46

Thankyou for sharing your story ,it must be so raw at the moment.
Thoughts are with you and your family .
Debby

User
Posted 20 Feb 2018 at 10:56

I’m so, so sorry to read your sad story. Nothing I can say will be adequate.

Take care of each other.

Dave

User
Posted 20 Feb 2018 at 16:07

I am so sorry for your loss - it must have all been such a shock for you. Be kind to yourself x

User
Posted 20 Feb 2018 at 22:19
I am so sorry for your loss no words can express how you must be feeling, thank you for taking time to share your story..love to you and your family.xx
User
Posted 21 Feb 2018 at 08:18
So sorry to read of your loss and thank you for sharing your story. Please be kind to yourself now as you and your family start to come to terms with your new and unwanted life without your dear husband. Love Janet, x
User
Posted 21 Feb 2018 at 14:34
So sorry for your loss and thank you for sharing.💐💞
User
Posted 02 Mar 2018 at 08:55

Dear Debby,

I am so sorry to read your post. Please don’t apologise for ranting - I hope it helps you to tell us and to write it down, and we understand. I remember being in a similar situation when things accelerated fast at the end of my husband’s life, and feeling I needed someone to explain what had happened and why. And going over and over in your mind what has happened is perfectly normal.

Have you a doctor you trust to talk to? Someone involved enough to explain the last few weeks and days? I ask because this really helped me. I was tortured by what had happened, why and wondering whether I could have prevented it. Although painful, and grief takes its own time,I eventually found comfort in realising the extent of the damage to Mike’s body by the cancer and by some of the treatments. The quick pace it happened at the end was kinder to him than a longer period of suffering. And only looking backwards could I realise how ill and near the end of his life he had been. But initially it isn’t easy to realise for those of us who are loved ones and left alone with the shock and reality of our loss.

In Mike’s situation I believe there were similarities towards the end - Mike actually had very weakened and damaged stomach walls in addition to the very advanced cancer which we hadn’t really processed properly, or talked about. And like you, the day to day focus was dealing with the current issue of bleeding, medication, finding a wheelchair and other such things that you are suddenly responsible for. I now realise how grateful I am that Mike didn’t suffer for longer, that we hadn’t the chance to talk about it but the thought process took time.

I think it may help you to discuss with the Specialist Nurses from the PCUK site, 0800 074 8383, they are really good and understand where our family, friends and even the professionals involved in our loved ones care often don’t. Would it help to see if your GP or local hospice can arrange counselling? It isn’t for everyone but does help some.

Please take care of you, the shock of your loss and your carer’s role take their toll on your health so please be as gentle as you can with yourself. And remember we are here to help if we can.

Love Janet, x

Show Most Thanked Posts
User
Posted 19 Feb 2018 at 23:04

Bluebell


So sorry to read your story.  I hope your happy memories give you some comfort as the days go by.


Ulsterman

User
Posted 19 Feb 2018 at 23:29

Bluebell,

So so sorry for the loss of your lovely husband. Thank you for sharing your story for others to learn from.

Far too young please accept my condolences and a virtual hug.

Clare

User
Posted 19 Feb 2018 at 23:37

Oh Bluebell, I am so sad for you. All those people who say things like "it's an old man's disease" and "it's the best cancer to get" should be made to read your story. We do lightly say to people that most breeze through the chemo but as you have found, the complications can be very serious.

It may be a little bit too soon for your son to start being PSA tested but certainly from the age of 40 he should insist even if his GP isn't keen. You have a lot to do and sort out at the minute but perhaps in a few weeks or months, you could talk to your son about whether he might want to see a genetics specialist. Only a tiny number of prostate cancers are genetic (about 5% - 10%) but the fact that your husband was young and the cancer was so aggressive might make it worth doing.

You and your family are on my mind tonight.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 20 Feb 2018 at 07:24

Woke up today to read this , and as a young man myself my thoughts go out to you all. Thinking of you x

User
Posted 20 Feb 2018 at 08:48
Bluebell

So sorry to hear of your loss, please accept my sincere condolences.

Thanks Chris
User
Posted 20 Feb 2018 at 09:18

Dear Bluebell and family

I was so sorry to see your post and I was also very sad that you didn't approach us sooner.

We may not have been able to predict the outcome or give much advice but what we could have done (and what we are doing now) is to offer you support and a shoulder to lean on.

It was also sad that you weren't with him at the end, but maybe he would have preferred you to be that one step further back so that he could pass in peace and without stressing that you would suffer watching him go.

All the old platitudes (time will heal etc.) don't exactly help at the moment but eventually you will be able to look back and remember the happier times and the joy he brought you all.

I am thinking of you

Sandra X

We can't control the winds - but we can adjust our sails
User
Posted 20 Feb 2018 at 09:34
Thankyou for all the replies,i forgot to say he was started on xtandi 5 days ago,and from then he seemed to go downhill,he was on so much medication,he lasted 14 months from diagnosis but it was probably spreading for years,its not until its over you think if only he had psa earlier.
As he died in the A & E i am waiting for coroner to phone to say exact cause,as they could not work out why he went so quickly when admitted.
User
Posted 20 Feb 2018 at 09:46

Thankyou for sharing your story ,it must be so raw at the moment.
Thoughts are with you and your family .
Debby

User
Posted 20 Feb 2018 at 10:56

I’m so, so sorry to read your sad story. Nothing I can say will be adequate.

Take care of each other.

Dave

User
Posted 20 Feb 2018 at 16:07

I am so sorry for your loss - it must have all been such a shock for you. Be kind to yourself x

User
Posted 20 Feb 2018 at 16:16

Sorry for your loss and thank you for sharing your story ..

Edited by member 20 Feb 2018 at 16:18  | Reason: Not specified

User
Posted 20 Feb 2018 at 22:19
I am so sorry for your loss no words can express how you must be feeling, thank you for taking time to share your story..love to you and your family.xx
User
Posted 21 Feb 2018 at 08:18
So sorry to read of your loss and thank you for sharing your story. Please be kind to yourself now as you and your family start to come to terms with your new and unwanted life without your dear husband. Love Janet, x
User
Posted 21 Feb 2018 at 14:34
So sorry for your loss and thank you for sharing.💐💞
User
Posted 22 Feb 2018 at 17:20
Thanks everyone for your messages,
After phone calls back and forth to coroner,finally got the cause of death as progressing pneumonia and high grade prostrate cancer,
As my husband was always cheerful and full of banter in front of others including docs,no one realised how ill he really was including myself really,i used to think once he goes on this medication he will feel better etc etc,and he wasn,t one to keep asking doctors for help with pain etc.
Also because we never asked how bad it was or to see scans we were not expecting it.
I take comfort that he is not in pain anymore.
User
Posted 23 Feb 2018 at 08:31

I think your story mirrors mine in some respects. Cheerful and full of banter is exactly how my late husband dealt with family and doctors. Although I had been aware how bad things were we didn’t talk about it and I realised afterwards that Mike knew too and it was just too painful for him to discuss openly.

We were always looking for the next solution, indeed until the day he died he had hope of better times ahead. Over the years I have gained comfort from this and sincerely hope you do in addition to the comfort of him not being in pain anymore.

This new life is still very, very new for you. Take care of you, Janet, x

User
Posted 23 Feb 2018 at 08:57
I am so sorry for the loss of your husband it must have been such a shock for you all. Thank you for sharing this with us at such a difficult time.
My thoughts are with you and your family.
User
Posted 23 Feb 2018 at 19:21
That’s devastating. I’m so sorry to hear your dreadful news. Deepest condolences to you and your family. Try to stay strong but I do know how hard that will be
User
Posted 24 Feb 2018 at 21:48
I am so sorry to read of your loss, my thoughts are with you and your family

Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019

User
Posted 25 Feb 2018 at 18:16
So sorry for your loss absolutely devastating x
User
Posted 25 Feb 2018 at 19:07

A very sad but cautionary story

Barry
User
Posted 25 Feb 2018 at 21:53

So sorry to hear about your recent sad news. It must be devasting for you and your family. It takes courage to talk about these things in such a short time after your husbands passing.Thanks for sharing your story.
Thoughts are with you.
Keithyboy

User
Posted 01 Mar 2018 at 20:31
Hello again,
My husbands death was put as,progressing pnumonitis,and advanced metatastic carcinoma of the prostrate.i keep thinking back to monday before when we went to pick up xtandi tablets at hospital,he had a nosebleed on the sunday and was still bleeding on monday at hospital,they done blood tests and said his platlets were very low 55 supposed to be 400 to 500,
In the meantime they wanted to cauterise his nose,after waiting 4 hours were told do go to A & E
Luckily nurse saw us quick.before he went in he vommited loads of brown stuff,nurse just took it away,he had his nose done then were told we could go,after going back to other part of hospital to get nose cream,by this time i had to put him in wheelchair as he was going dizzy,we did not hear anything else about his blood,and by the following sunday he passed away.
Sorry for ranting,but just seems wrong.
Debby.
User
Posted 02 Mar 2018 at 08:55

Dear Debby,

I am so sorry to read your post. Please don’t apologise for ranting - I hope it helps you to tell us and to write it down, and we understand. I remember being in a similar situation when things accelerated fast at the end of my husband’s life, and feeling I needed someone to explain what had happened and why. And going over and over in your mind what has happened is perfectly normal.

Have you a doctor you trust to talk to? Someone involved enough to explain the last few weeks and days? I ask because this really helped me. I was tortured by what had happened, why and wondering whether I could have prevented it. Although painful, and grief takes its own time,I eventually found comfort in realising the extent of the damage to Mike’s body by the cancer and by some of the treatments. The quick pace it happened at the end was kinder to him than a longer period of suffering. And only looking backwards could I realise how ill and near the end of his life he had been. But initially it isn’t easy to realise for those of us who are loved ones and left alone with the shock and reality of our loss.

In Mike’s situation I believe there were similarities towards the end - Mike actually had very weakened and damaged stomach walls in addition to the very advanced cancer which we hadn’t really processed properly, or talked about. And like you, the day to day focus was dealing with the current issue of bleeding, medication, finding a wheelchair and other such things that you are suddenly responsible for. I now realise how grateful I am that Mike didn’t suffer for longer, that we hadn’t the chance to talk about it but the thought process took time.

I think it may help you to discuss with the Specialist Nurses from the PCUK site, 0800 074 8383, they are really good and understand where our family, friends and even the professionals involved in our loved ones care often don’t. Would it help to see if your GP or local hospice can arrange counselling? It isn’t for everyone but does help some.

Please take care of you, the shock of your loss and your carer’s role take their toll on your health so please be as gentle as you can with yourself. And remember we are here to help if we can.

Love Janet, x

User
Posted 02 Mar 2018 at 09:33

Such wise words from Janet who really understands what you are feeling Debby because even though people like me offer our thoughts unless you've been there you can't really understand.

I hope you find peace in your mind and heart.

We can't control the winds - but we can adjust our sails
User
Posted 04 Apr 2018 at 13:37

Thank you everyone for your kind words,a bit late in replying as only had funeral last week,had a wait of nearly 6 weeks,
Im still mad at how long it took my husband to be diagnosed,but hopefully now we seem to be hearing a lot more on prostrate cancer men will get tested and diagnosed earlier.

User
Posted 05 Apr 2018 at 12:07

Dear Debby,

Thank you for your update, and I am sorry to hear you had to wait nearly six weeks for your husband’s funeral.

Take care of you now. As you say we seem to be hearing much more now encouraging men to get tested and diagnosed earlier which is great. But this new life is all so fresh and unwanted for you and you really do need to take gentle steps and allow yourself to heal.

Janet, x

 
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