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2 weeks has turned to months

User
Posted 27 Jun 2019 at 08:24

My husband was first diagnosed with Prostate Cancer is 2011 and initially had 37 sessions of radiotherapy, his PSA never quite got to zero (0.67) so over the next few years we watched as it slowly started to rise. In 2016 it hit 2.34 in May then in September it hit 5.09. I know these are small figures compared to many but we knew from scans in the early days that my husband's PSA was a good indicator of the disease on the move. It had been seen in his lymph nodes.

So in September 2016 the terminal diagnosis was given and then followed Prostap PSA almost immediately went to 0.065 and then slowly crept back up over the following year to 2.09. In July 2017 Enzalutamide for 21 days brought the PSA down to 0.14 but atrial fibrillation meant the end of that. The no treatment other than Prostap until November 2017 which saw the Abiraterone journey which lasted until February this year. On Abiraterone my husband's PSA  ended up at 34.8 in March 2019 then 90 in April 2019, again not high for some people. So on May 3rd we received the results of the latest CT scan, the cancer had spread from the prostate and surrounding lymph nodes to the liver and appeared quite advanced in the liver. 

That was a shock, but then to be told that chemotherapy, which had been the next treatment we expected, wouldn't actually do anything so we should only have palliative care and the prognosis was a couple of weeks, possibly more was the real shock. My husband and I got a lot done in those two weeks, all sorts of things sorted out, discussions had, close family and friends informed and even the funeral service thought about. As my husband said he felt like a bit of a fraud as he didn't feel unwell. We had been told that as the cancer was not in his bones he shouldn't really have any pain and would just get progressively more tired, eat and drink less and become more mobile.

In the first three weeks we were having two to three visitors a day, week four and five two a day, week six one a day and then none from week seven. Sure enough after week three my husband was getting a bit more tired, coming downstairs around 8-9am and going to bed around 10-11pm, this slowly changed and over the course of week five was going to bed about 7-8pm, in week six he suddenly started to go to bed at 5pm, then 4pm, then 3pm then 1pm. He was getting weaker during this time and having trouble hauling himself upstairs.

Last week on 11th June he came downstairs and managed less than two hours before going back upstairs to bed - he hasn't come downstairs since. He is happy and comfortable being in bed, has his PC there, reads, watches TV and dozes on and off. He asked me yesterday if I really thought he was going to die as he didn't expect to still be here, I suppose it beats the question he asked me last week - "Have you booked my funeral?"!! At least we can still laugh.

So now I have a weak, tired man who doesn't eat more than a few mouthfuls of food a day enjoying his last weeks relaxed, happy and with everything organised, down to the music for the funeral service, the location and the guest list as well as what he calls the after party. I am not sure how much longer he will last but according to the hospice nurses he doesn't look like he is going anywhere immediately. Tomorrow it will be eight weeks since we were told he had two weeks and I think I could well be here in another four weeks with an update.

Edited by member 27 Jun 2019 at 19:08  | Reason: Not specified

User
Posted 27 Jun 2019 at 09:42

Thanks for sharing - while it is, of course, a sad story, and it must be a very difficult time for you, at least he's been spared some of the more unpleasant experiences that we hear so much about, and it's good to hear that he's still comfortable.

It's also good that you've both been able to face this in such a brave and practical way; it says a lot for your relationship, and your family!

I'm guessing from your account that the medical team think it's the liver disease and nothing else - a notoriously difficult disease to make predictions about, even when the original source is known.

While it's clear that you have a good supportive team to call on, I hope you'll feel free to ask if there's anything people here can advise on - there's a wealth of experience.

User
Posted 27 Jun 2019 at 14:03

Hi Tilly

I'm so sorry to read your story, a story of sadness, reality and somehow, triumph. I’ve been trying to mentally prepare myself for this day due to recent developments and can o oh hope that I have as much fortitude as I see here in your post.

My husband’s pain has increased exponentially over the last twelve days and I think I feel rather shocked at how quickly it comes on although we have been here before, he has now had to have increased fentanyl patches (50ml) and that isn’t quite enough. It’s a frightening horizon for all of us facing this ahead, for different reasons I know, but in any case, I just wanted to say that I’m thinking of you and echo that we are here for you to offload  like.

with much love

Devonmaid xxxx

User
Posted 27 Jun 2019 at 17:52
So very sorry that it has gone this way for your husband. One can never predict at this stage 'just how long' but the essential thing now it that pain relief is provided if/as/when needed.
Barry
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User
Posted 27 Jun 2019 at 09:42

Thanks for sharing - while it is, of course, a sad story, and it must be a very difficult time for you, at least he's been spared some of the more unpleasant experiences that we hear so much about, and it's good to hear that he's still comfortable.

It's also good that you've both been able to face this in such a brave and practical way; it says a lot for your relationship, and your family!

I'm guessing from your account that the medical team think it's the liver disease and nothing else - a notoriously difficult disease to make predictions about, even when the original source is known.

While it's clear that you have a good supportive team to call on, I hope you'll feel free to ask if there's anything people here can advise on - there's a wealth of experience.

User
Posted 27 Jun 2019 at 14:03

Hi Tilly

I'm so sorry to read your story, a story of sadness, reality and somehow, triumph. I’ve been trying to mentally prepare myself for this day due to recent developments and can o oh hope that I have as much fortitude as I see here in your post.

My husband’s pain has increased exponentially over the last twelve days and I think I feel rather shocked at how quickly it comes on although we have been here before, he has now had to have increased fentanyl patches (50ml) and that isn’t quite enough. It’s a frightening horizon for all of us facing this ahead, for different reasons I know, but in any case, I just wanted to say that I’m thinking of you and echo that we are here for you to offload  like.

with much love

Devonmaid xxxx

User
Posted 27 Jun 2019 at 17:52
So very sorry that it has gone this way for your husband. One can never predict at this stage 'just how long' but the essential thing now it that pain relief is provided if/as/when needed.
Barry
User
Posted 28 Jun 2019 at 00:07

I am so sorry that you have had this news but glad that your husband is happy at home with you in his own surroundings.  Thinking if you and will hold you in my prayers.xe

Edited by member 28 Jun 2019 at 21:38  | Reason: Not specified

User
Posted 09 Jul 2019 at 22:53
I am thinking of you Tillie and you, your husband and family are in my prayers. Xx
Debbie xxx
User
Posted 12 Jul 2019 at 09:59

Tillie

you've been on my mind a lot and I’m hoping that you are alright, given what you said in your original post.

with love Devonmaid xxxx

 
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