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The beginning of the end?

User
Posted 06 Sep 2019 at 17:15

Hi 

My husband was diagnosed when he was 48 with PSA of 12 (can’t remember his gleeson score) the only symptom he had at the time was low back ache, he’s now 61. After his first radiotherapy he was told he was ‘cured’ and to go home and live his life. 3 months after that they discovered he had bone mets and that the sneaky little cancer cells had got through his lymph gland into his pelvis. 

He’s had two lots of chemo and went on the ReAct trial, and was told about 3 months ago he’s had all the treatment available unless there are any trials suitable. 

We visited our local hospice and had a palliative care meeting which was very useful as we discovered much better to discuss these things whilst relatively well.

He’s now been diagnosed with Cauda Equina which caused a numb perineum and tingling in his feet and fingers. We’re waiting for a Urology appointment so they can teach him to catheterise himself or have a permanent catheter fitted with a little tap on the end as he’s finding it more and more difficult to pass urine.  He’s been quite ill for the passed 3 weeks and had to be rushed to hospital with svt and heart rate of 219! This is the man who windsurfed through his chemo, cycled 100 miles a couple of times and worked everyday of his radiotherapy, he’s not a slocher and it’s extremely hard to see him so fatigued that having a show is exhausting for him.

sorry for the long post xx

 

User
Posted 07 Sep 2019 at 06:47

Hi

my husband is in the same space but the end of the beginning has come along quite quickly after years of luck with treatments. He now has a hospital bed downstairs at home and is on a Syringe driver. I think this has been a blessed relief because he has not been out of pain for years and now he mostly is. Every day is a rollercoaster with ups and downs, but the peaceful state he is in makes me (and everyone else) feel much better. The hospice have organised everything for me, the GP comes out if I ask and pops in for a visit too. The district nurses come, at least once a day but more if I need them. The hospice are providing night sitters so that I can get some rest, they have been such a boon, lovely people who are calm and know exactly what to do, not in the least intrusive. We are having a care package shortly, I’ve simply asked for someone to help with personal care and to help me change the bed (I possible to do on my own as hubby is too weak now to get out). I can’t thank everyone enough for the wonderful support I am getting at home, and it means that we have all our home comforts without the need for hospital admission. We agreed a TEP with our doctor, this means no acute hospital admissions, it was scary as John has sepsis a few months ago (it was what made us decide not to go to hospital again due to 23 hours on a hospital trolley with severe pain in his hips). We do receive antibiotics if John needs them and in fact, have some at home for use immediately if he gets an infection. He has a supra pubic catheter from previous retention issues so that’s the source of infections for him. I decided a week ago to give up my usual stance of being superwoman, and now accept all help offered on the basis that I need to be available to my husband and not his nurse. The district nurses told me to call my brother in law form Sweden three days ago if he wanted to see John lucid again, he’s bounced back a bit now his beloved brother is here, which is a great comfort.  Don’t be afraid if you get offered these services at home, I’m surprised and elated that I have been able to manage with support.

with my love, I do know what you are going through

Devonmaid xxxx

 

 

 

User
Posted 06 Sep 2019 at 17:15

Hi 

My husband was diagnosed when he was 48 with PSA of 12 (can’t remember his gleeson score) the only symptom he had at the time was low back ache, he’s now 61. After his first radiotherapy he was told he was ‘cured’ and to go home and live his life. 3 months after that they discovered he had bone mets and that the sneaky little cancer cells had got through his lymph gland into his pelvis. 

He’s had two lots of chemo and went on the ReAct trial, and was told about 3 months ago he’s had all the treatment available unless there are any trials suitable. 

We visited our local hospice and had a palliative care meeting which was very useful as we discovered much better to discuss these things whilst relatively well.

He’s now been diagnosed with Cauda Equina which caused a numb perineum and tingling in his feet and fingers. We’re waiting for a Urology appointment so they can teach him to catheterise himself or have a permanent catheter fitted with a little tap on the end as he’s finding it more and more difficult to pass urine.  He’s been quite ill for the passed 3 weeks and had to be rushed to hospital with svt and heart rate of 219! This is the man who windsurfed through his chemo, cycled 100 miles a couple of times and worked everyday of his radiotherapy, he’s not a slocher and it’s extremely hard to see him so fatigued that having a show is exhausting for him.

sorry for the long post xx

 

User
Posted 06 Sep 2019 at 21:08

Sorry to hear this. From what I can see from your post, he doesn’t seem to have had all possible treatments though. Is he having suppression of testosterone for example? Equina cauda is a bundle of nerves at the bottom of the spinal column. Is there something pressing on it which is causing his symptoms? Has it been looked at by MRI scanning? I had a problem with this and it was fixed by 5 doses of radiotherapy to the lumbar spine region. What does his oncologist say?

Edited by member 06 Sep 2019 at 21:09  | Reason: Not specified

User
Posted 06 Sep 2019 at 23:57
Sorry to see this, miss muffet - as you say, the beginning of the end. On a brighter note, the beginning can last for quite a long time and there is still the middle and the end of the end after that. Sounds like you have a good hospice service available to you; I found that having those conversations about wishes and preferences while the person is still reasonably well is much less frightening for them and for you. It also provides some peace of mind I think, to have a picture of what care package might be available and who would be on hand to help. With the horrible stuff sorted out, you can perhaps concentrate on enjoying the good days and rolling with the bad days.

You have been a member for a long time so I am guessing that you are aware that a couple of the other wives are currently dealing with the end of the end, and that you know this is a safe place if you are worried or need to let off steam.

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

User
Posted 08 Sep 2019 at 12:13

Originally Posted by: Online Community Member
You have been a member for a long time so I am guessing that you are aware that a couple of the other wives are currently dealing with the end of the end, and that you know this is a safe place if you are worried or need to let off steam.

I have been a member for a long time but have been doing my usual ostrich trick and not contributed much I’m afraid until now xx

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User
Posted 06 Sep 2019 at 21:08

Sorry to hear this. From what I can see from your post, he doesn’t seem to have had all possible treatments though. Is he having suppression of testosterone for example? Equina cauda is a bundle of nerves at the bottom of the spinal column. Is there something pressing on it which is causing his symptoms? Has it been looked at by MRI scanning? I had a problem with this and it was fixed by 5 doses of radiotherapy to the lumbar spine region. What does his oncologist say?

Edited by member 06 Sep 2019 at 21:09  | Reason: Not specified

User
Posted 06 Sep 2019 at 23:57
Sorry to see this, miss muffet - as you say, the beginning of the end. On a brighter note, the beginning can last for quite a long time and there is still the middle and the end of the end after that. Sounds like you have a good hospice service available to you; I found that having those conversations about wishes and preferences while the person is still reasonably well is much less frightening for them and for you. It also provides some peace of mind I think, to have a picture of what care package might be available and who would be on hand to help. With the horrible stuff sorted out, you can perhaps concentrate on enjoying the good days and rolling with the bad days.

You have been a member for a long time so I am guessing that you are aware that a couple of the other wives are currently dealing with the end of the end, and that you know this is a safe place if you are worried or need to let off steam.

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

User
Posted 07 Sep 2019 at 00:04

Originally Posted by: Online Community Member

Sorry to hear this. From what I can see from your post, he doesn’t seem to have had all possible treatments though. Is he having suppression of testosterone for example? .......

What does his oncologist say?

His onco has stopped treatments and referred him to palliative care, DW. He has had RT, HT, chemo, enzalutimide and been on the enzo/ADZ trial. 

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

User
Posted 07 Sep 2019 at 06:47

Hi

my husband is in the same space but the end of the beginning has come along quite quickly after years of luck with treatments. He now has a hospital bed downstairs at home and is on a Syringe driver. I think this has been a blessed relief because he has not been out of pain for years and now he mostly is. Every day is a rollercoaster with ups and downs, but the peaceful state he is in makes me (and everyone else) feel much better. The hospice have organised everything for me, the GP comes out if I ask and pops in for a visit too. The district nurses come, at least once a day but more if I need them. The hospice are providing night sitters so that I can get some rest, they have been such a boon, lovely people who are calm and know exactly what to do, not in the least intrusive. We are having a care package shortly, I’ve simply asked for someone to help with personal care and to help me change the bed (I possible to do on my own as hubby is too weak now to get out). I can’t thank everyone enough for the wonderful support I am getting at home, and it means that we have all our home comforts without the need for hospital admission. We agreed a TEP with our doctor, this means no acute hospital admissions, it was scary as John has sepsis a few months ago (it was what made us decide not to go to hospital again due to 23 hours on a hospital trolley with severe pain in his hips). We do receive antibiotics if John needs them and in fact, have some at home for use immediately if he gets an infection. He has a supra pubic catheter from previous retention issues so that’s the source of infections for him. I decided a week ago to give up my usual stance of being superwoman, and now accept all help offered on the basis that I need to be available to my husband and not his nurse. The district nurses told me to call my brother in law form Sweden three days ago if he wanted to see John lucid again, he’s bounced back a bit now his beloved brother is here, which is a great comfort.  Don’t be afraid if you get offered these services at home, I’m surprised and elated that I have been able to manage with support.

with my love, I do know what you are going through

Devonmaid xxxx

 

 

 

User
Posted 08 Sep 2019 at 12:10

Originally Posted by: Online Community Member

Sorry to hear this. From what I can see from your post, he doesn’t seem to have had all possible treatments though. Is he having suppression of testosterone for example? Equina cauda is a bundle of nerves at the bottom of the spinal column. Is there something pressing on it which is causing his symptoms? Has it been looked at by MRI scanning? I had a problem with this and it was fixed by 5 doses of radiotherapy to the lumbar spine region. What does his oncologist say?

hi Dark Warrior. Yes he has zoladex injection every 3 months, He had an MRI to confirm the Cauda Equina and had the 5 sessions of radiotherapy which was started the day after so they were very efficient. He has bone mets in his lower spine and sacrum as well as his pelvis so inflammation from that was causing the pain and numbness. 

User
Posted 08 Sep 2019 at 12:13

Originally Posted by: Online Community Member
You have been a member for a long time so I am guessing that you are aware that a couple of the other wives are currently dealing with the end of the end, and that you know this is a safe place if you are worried or need to let off steam.

I have been a member for a long time but have been doing my usual ostrich trick and not contributed much I’m afraid until now xx

 
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