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User
Posted 25 Jun 2020 at 08:12

Hello anyone who reads this!

I’ve been a member of this forum for nearly two years now, and although I rarely comment I have read conversations and threads avidly.

Back at the beginning of this awful journey, I found the knowledge, experience and generous kindness here really helpful and reassuring, even though reading posts from people farther along the journey scared me sometimes at what lays in store.

I’ve dipped in and out since then, generally finding myself back here when things weren’t going so well. It’s been quite some time, which means for us things have been kind of going ok, but now we’re joining the ‘running out of options’ club, and well - here I am seeking a safe space where I can keep a record of this time and know that there are others who understand who might read it.

I’m not really sure why I can’t just write it down in a journal, I think there’s something about placing my thoughts and our experience in a place specifically focused on the prostate cancer that crashed into all our lives and changed them irrevocably. I hope it’s ok to use this forum as a kind of ‘dear diary’ because I feel that’s exactly what I need right now.

But I’m not sure where to start. Should I give a quick outline of the last two years, or start with yesterday’s phone call with the consultant? Maybe I can do both. But perhaps I should start with who we are. 

So, my name is Fran. My partner, and the love of my life, is Steve. And he is approaching the final months of living with prostate cancer. We don’t have a clear idea of exactly how many months, but it’s definitely not years.

He’s been through so much, his diagnosis was out of the blue (thanks to Bill Turnbull appealing to men to get checked, and my nagging) as he had no symptoms.  From the initial PSA results of 7, which didn’t seem particularly high, or so we thought - we quickly learned a whole new lexicon, and that 7 took on a whole new meaning. Numbers started to rule our lives.

His tumour was a Gleason 9 (5+4), and even though things moved quickly and he had the RARP in August 2018, it was too late to stop the spread. His first PSA after the surgery told us that. He was away with his daughter who was visiting from Australia when he got the results, and I remember the phone call clearly when he rang to say his PSA was 8. He was really happy about it, as it had climbed rapidly prior to the surgery, so in comparison 8 seemed a great result to him. I remember feeling sick. And not saying anything. I didn’t want to ruin his precious weekend with his girl.

When he got home, I sat him down with a drink and told him straight that a PSA of 8 was not good at all. We both cried. And then on we went. He was put straight onto hormone therapy. I quietly put the £50 copy of ‘Saving your sex life’ away.

He had a bout of sepsis which put him back in hospital by a blue lighted ambulance. He had a stricture in his urethra which put him back in hospital in dreadful pain as the doctors couldn’t catheterise him and he had to be transferred to a teaching hospital. He stayed positive and hopeful, even when we found out the PETPSMA scan he needed wasn’t available on the NHS )it should have been) and we had to pay for it privately. We never got that £1,600 back despite endless letters to NHS England and our MP.

He has seven weeks of radiotherapy. We did the daily 60 mile round trips after he finished work each day. That held the progress of the cancer back for a bit. For his 65th birthday last year we went to Naples, we celebrated the day with a trip up Vesuvius, and then watched the sun go down amidst the ruins of Pompeii.

He continued with the Prostap injections. And then, gradually at first, and then faster and faster, the monthly PSA results headed in the wrong direction. From 0.06, up to 0.1. And then 2, 6, 19. Alarm bells were ringing. His consultant phoned him on a Saturday afternoon to explain that new interventions were needed. We picked up a prescription for Bicalutamide just as the government announced the country was going into lockdown.

The next PSA test a month later was carried out by a nurse dressed like an astronaut, in full PPE. The results came back that evening. 119.

Cue more urgent phone discussions with the consultant. A new prescription for Enzalutamide was issued, and after an alarming phone call with the pharmacy about all the possible side effects, and a further PSA test four days later (154) off I went to pick up a month’s supply.

That was two months ago. After the first four weeks things seemed positive (apart from the global pandemic, obviously). His PSA went down to 96. The pains and debilitating fatigue, the brutal hot flushes and sweats all were worthwhile. It was working. 

Except it wasn’t. On Monday this week the latest PSA came back as 223. Yesterday we finally managed to get hold of his consultant. The conversation was realistic and honest. It’s months, not years now.

So, here we are. Clinical trials are a possibility. But Covid-19 might mean they’re not. Chemo is a possibility. But Steve wants quality of what life he has left. So that’s probably not an option.

Right now we’re both still very sad, a bit scared, both separately veering between trying to buck ourselves up and find the positives in this crappy situation, and buckling under the enormity of it. I know things will evolve as we process the information that we both knew but had hoped against hope wasn’t the case.

There will be more scans done in the next few weeks. He is continuing on the Enzalutamide for now. It’s going to be 32’ today and the sky is a brilliant blue. It’s all surreal.

I’ll come back to this safe space and keep telling the story of this time as we go through it. I don’t know if reading it will help anyone. I hope it might. But writing it down is helping me feel some order in this unreal chaos. 

 

User
Posted 25 Jun 2020 at 08:12

Hello anyone who reads this!

I’ve been a member of this forum for nearly two years now, and although I rarely comment I have read conversations and threads avidly.

Back at the beginning of this awful journey, I found the knowledge, experience and generous kindness here really helpful and reassuring, even though reading posts from people farther along the journey scared me sometimes at what lays in store.

I’ve dipped in and out since then, generally finding myself back here when things weren’t going so well. It’s been quite some time, which means for us things have been kind of going ok, but now we’re joining the ‘running out of options’ club, and well - here I am seeking a safe space where I can keep a record of this time and know that there are others who understand who might read it.

I’m not really sure why I can’t just write it down in a journal, I think there’s something about placing my thoughts and our experience in a place specifically focused on the prostate cancer that crashed into all our lives and changed them irrevocably. I hope it’s ok to use this forum as a kind of ‘dear diary’ because I feel that’s exactly what I need right now.

But I’m not sure where to start. Should I give a quick outline of the last two years, or start with yesterday’s phone call with the consultant? Maybe I can do both. But perhaps I should start with who we are. 

So, my name is Fran. My partner, and the love of my life, is Steve. And he is approaching the final months of living with prostate cancer. We don’t have a clear idea of exactly how many months, but it’s definitely not years.

He’s been through so much, his diagnosis was out of the blue (thanks to Bill Turnbull appealing to men to get checked, and my nagging) as he had no symptoms.  From the initial PSA results of 7, which didn’t seem particularly high, or so we thought - we quickly learned a whole new lexicon, and that 7 took on a whole new meaning. Numbers started to rule our lives.

His tumour was a Gleason 9 (5+4), and even though things moved quickly and he had the RARP in August 2018, it was too late to stop the spread. His first PSA after the surgery told us that. He was away with his daughter who was visiting from Australia when he got the results, and I remember the phone call clearly when he rang to say his PSA was 8. He was really happy about it, as it had climbed rapidly prior to the surgery, so in comparison 8 seemed a great result to him. I remember feeling sick. And not saying anything. I didn’t want to ruin his precious weekend with his girl.

When he got home, I sat him down with a drink and told him straight that a PSA of 8 was not good at all. We both cried. And then on we went. He was put straight onto hormone therapy. I quietly put the £50 copy of ‘Saving your sex life’ away.

He had a bout of sepsis which put him back in hospital by a blue lighted ambulance. He had a stricture in his urethra which put him back in hospital in dreadful pain as the doctors couldn’t catheterise him and he had to be transferred to a teaching hospital. He stayed positive and hopeful, even when we found out the PETPSMA scan he needed wasn’t available on the NHS )it should have been) and we had to pay for it privately. We never got that £1,600 back despite endless letters to NHS England and our MP.

He has seven weeks of radiotherapy. We did the daily 60 mile round trips after he finished work each day. That held the progress of the cancer back for a bit. For his 65th birthday last year we went to Naples, we celebrated the day with a trip up Vesuvius, and then watched the sun go down amidst the ruins of Pompeii.

He continued with the Prostap injections. And then, gradually at first, and then faster and faster, the monthly PSA results headed in the wrong direction. From 0.06, up to 0.1. And then 2, 6, 19. Alarm bells were ringing. His consultant phoned him on a Saturday afternoon to explain that new interventions were needed. We picked up a prescription for Bicalutamide just as the government announced the country was going into lockdown.

The next PSA test a month later was carried out by a nurse dressed like an astronaut, in full PPE. The results came back that evening. 119.

Cue more urgent phone discussions with the consultant. A new prescription for Enzalutamide was issued, and after an alarming phone call with the pharmacy about all the possible side effects, and a further PSA test four days later (154) off I went to pick up a month’s supply.

That was two months ago. After the first four weeks things seemed positive (apart from the global pandemic, obviously). His PSA went down to 96. The pains and debilitating fatigue, the brutal hot flushes and sweats all were worthwhile. It was working. 

Except it wasn’t. On Monday this week the latest PSA came back as 223. Yesterday we finally managed to get hold of his consultant. The conversation was realistic and honest. It’s months, not years now.

So, here we are. Clinical trials are a possibility. But Covid-19 might mean they’re not. Chemo is a possibility. But Steve wants quality of what life he has left. So that’s probably not an option.

Right now we’re both still very sad, a bit scared, both separately veering between trying to buck ourselves up and find the positives in this crappy situation, and buckling under the enormity of it. I know things will evolve as we process the information that we both knew but had hoped against hope wasn’t the case.

There will be more scans done in the next few weeks. He is continuing on the Enzalutamide for now. It’s going to be 32’ today and the sky is a brilliant blue. It’s all surreal.

I’ll come back to this safe space and keep telling the story of this time as we go through it. I don’t know if reading it will help anyone. I hope it might. But writing it down is helping me feel some order in this unreal chaos. 

 

User
Posted 26 Jun 2020 at 22:14
Sorry but I’d detest the thought of no wine and raw food and being denied all the things that I love in life on a whim really. I’ve not changed my life in any way at all , whether that be right or wrong , but who knows if it has changed anything after 5 yrs. No cheese or wine or red meat or sausages etc then I’d be blo**dy more miserable.

Just saying sorry I truly am , but if things are as bad as you say then diet is truly unlikely to make any difference now at this stage. Sending best wishes

If life gives you lemons , then make lemonade

User
Posted 26 Jun 2020 at 23:11

Fran

At my last Onco meeting in March I was told my liver function was high and my Onco asked if I'd drank an increased amount of alcohol.

I explained I'd just returned from an all inclusive Cruise and hammered a South African wine for 10 nights called chocolate block.

He laughed and said don't worry your liver will surpass your cancer, enjoy the red wine and I do.

No right or wrongs in the stage 4 cancer club.

John

User
Posted 25 Jun 2020 at 11:48

Dear White Swan, I read through your post. I hope through writing it you have some sense of a problem shared. When prostate cancer becomes resistant to treatment it is incredibly difficult.

We all worry about the possibility of cancer spread and resistance.

Is he in pain? Hopefully the upcoming scans will provide more information and inform any further interventions.

All of this is made more difficult because of a Covid-19.

I am sure others will come along and offer support to. I think it is extremely difficult for a partner to watch their loved one become ill.

Take care and keep posting. 

Ido4

User
Posted 25 Jun 2020 at 12:08
I’m so sorry to read this. It must be very hard. Have you read my profile at all ?? I find it strange that you haven’t described clear details of spread or scan results. I was 53 last month and had RP 5 yrs ago. I’ve rejected all treatment offered as they said it wouldn’t cure me and all scans were unclear. My psa is in excess of 500 now yet I feel fine and am working. I expect I’ll get ill quite soon and then Probably start HT which I’ve totally not wanted having regained a sex life. It seems your hubby has a very aggressive form to be moving so fast and not responding well. Best wishes to both of you

If life gives you lemons , then make lemonade

User
Posted 25 Jun 2020 at 12:39

White Swan,

I read it in full, and I'm really sorry for the two of you and it seems very unfair. I don't have any useful comments to make, but thought I needed to say I'm listening and thinking of you.

User
Posted 25 Jun 2020 at 14:44
Desperately sorry to read your story. Many men can live out their entire lives with prostate cancer and die with it rather than from it, but for others it can be a very cruel disease that takes loved ones away in a matter of months. When the end does come it generally comes quickly - a matter of weeks - so now would be a good time to get all Steve's affairs in order while he is still feeling well.

I don't really know what else to say other than that this is a place where people will understand your situation. Unfortunately all we can really offer is sympathy.

Very best wishes,

Chris

User
Posted 25 Jun 2020 at 20:19

Hi White Swan

I can’t offer anything other than to say I read your thread twice and wanted to say I felt your pain and also the love coming through your words.

Using this forum as a journal makes a lot of sense to me as it combines the often advised ‘writing it down to prevent holding it within’ strategy with the added advantage of the ‘journal’ writing back to share experience (of which there is much on this forum) or just care (for those without experience).

Steve clearly is much loved and that shines through your post.

 

Clare

User
Posted 25 Jun 2020 at 20:21

I am so sorry to read what has happened, nothing is fair but never give up and please write whenever you feel about whatever you feel as we all care here. 

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 Jun 2020 at 21:43
Just a small amend needed to help people respond appropriately to your post White Swan - your husband / partner's post-op PSA was 0.88, not 8.

I wouldn't write off the possibility of chemo without talking to the consultant about it properly- there are many different chemos and the one for prostate cancer tends not to be as vicious as the images of 'chemo' that we often see on the TV. In fact, some people have only very mild side effects from docetaxel; my father-in-law breezed through it and his major grumble was not being allowed to go to the pub on days 5-10 ... others here have continued to work full time through docetaxel. He could perhaps start it and then stop if he is one of those more affected - research shows that even one or two sessions of docetaxel can make the enzalutimide more effective.

Finally, has anyone talked to him about applying for PIP? There is a fast track route for people deemed to have less than 6 months to live although many oncologists / nurse specialists will sign the application if there is a doubt about surviving 12 months. The money is to help you pay for things that you probably don't need now but might in the future - practical items if he becomes less mobile, night sitters or home care assistance in the final stages, some of the equipment that the local authority either can't provide or there are waiting lists for (specialist bed, for example), that kind of thing. Staff at your local hospice, the Macmillan nurse or Maggie's centre (if there is one near you) can help you to complete the application if he is eligible.

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

User
Posted 25 Jun 2020 at 22:45
So sad to read your update Fran, looks like Steve has a particularly virulent strain of the disease.

It seems odd that the scans can't pick up the precise areas of the metastatis, got to be worth talking to the Onco again for his views.

Don't dismiss chemotherapy as a further treatment, got to be worth a try.

Finally as Lyn mentioned ask your specialist nurse to urgently complete a DS1500 as this will give fast track entitlement to PIP.

Don't forget we're all here to help on this forum.

John

User
Posted 26 Jun 2020 at 11:42

Hi White Swan, That's a beautifully written piece that made me deeply wish I could do more.  

There isn't much in your profile and perhaps you could paste that note in.  If you're looking for a more personal way to do it, you could do a free Google Sites website and link it on your profile, I did that.

I've no experience on this but it seems that the operation removed a lot of it, if the psa went down to 0.88, as Lyn has written.  A pre-op psa of 7 would normally be re-assuring.  Although the psa increase since then has been surprisingly fast. 

We're all different but I can't help thinking I'd have a go at every treatment and decide then whether to continue with it.

Please keep us updated.

Best wishes,
Peter

User
Posted 26 Jun 2020 at 17:22
Hi White Swan

Sorry I can't offer any real advice, but try to make some more memories together while you can.

Best wishes

Cheers

Bill

User
Posted 27 Jun 2020 at 15:17

Hi,

Diet can help some aspects but I wouldn't get too carried away.  You spoke of chemo and quality of life.  Diet can make you happy or it can be a drudge.  Even so I took a few moves in that direction.

Drinking:

When I was diagnosed I stopped drinking alcohol for 6 months.  I found it made me anxious about my illness in the night and day after.   I didn't miss it for a long time and that was helped because I knew that anxious feeling wasn't good.

Now I limit myself to 2 nights and then only have a couple of bottles of beer or half a bottle of wine.  Sometimes I hardly know I've had any and wake up fine.

I only ever drank at night and usually in the house.  If you can get past those hours between say 7 and 8.30 when you normally start drinking you've cracked it.  It's passing that window that's so hard.   I try not to drink after 9pm anyway because you end up getting out of bed in the night.  To get over it at 7pm I had some strange drinks, one was Three Ginger Tea by Pukkah.   I tried quite a few of those.  There's a big range of tea like drinks that you have without milk.

The weekly limit is about a bottle of wine according to Public Health, and you should drink that across several nights.  I used to drink more than that in one night before I was diagnosed, although I never drank more than 3 nights a week.  There is alcoholism in the family and I need to prove I can stop.

Juices:

Be careful with the juices and blending, especially fruit, they can give you a sugar rush which isn't good.  You should drink them very slowly.

Diet:

Low fat, low sugar, careful with salt, multi-coloured veg, no red meat, 5 veg, 5 fruit, nuts and no snacks between meals are as far as it needs go.   That's hard enough.

Fasting:

There are also theories about fasting.  Cutting right back for 2 days in the week makes the body think it's short of food and it starts defending itself which boosts your immune system.  As a mini fast having nothing at all for 12 hours a day say 8pm to 8am can create some of those effects.   I know of a reputable journalist who swears by fasting as aiding an auto-immune disease she had I wouldn't get too carried away with it for Prostate Cancer.

Vitamin D:

Vitamin D3 is the preferred Vit D.  It is said to improve the immune system and bone strength.  Many people in northern latitudes are deficient.  Vitamin D3 tablets might be worth considering.

In my opinion these things can help a bit and can make you healthier but I wouldn't get carried away about diet as anything other than possibly providing an improvement to certain aspects that might help the body tolerate or perhaps fight the disease.

His mental life is important and enjoying himself.

Good luck with that,
Peter

 

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User
Posted 25 Jun 2020 at 11:48

Dear White Swan, I read through your post. I hope through writing it you have some sense of a problem shared. When prostate cancer becomes resistant to treatment it is incredibly difficult.

We all worry about the possibility of cancer spread and resistance.

Is he in pain? Hopefully the upcoming scans will provide more information and inform any further interventions.

All of this is made more difficult because of a Covid-19.

I am sure others will come along and offer support to. I think it is extremely difficult for a partner to watch their loved one become ill.

Take care and keep posting. 

Ido4

User
Posted 25 Jun 2020 at 12:08
I’m so sorry to read this. It must be very hard. Have you read my profile at all ?? I find it strange that you haven’t described clear details of spread or scan results. I was 53 last month and had RP 5 yrs ago. I’ve rejected all treatment offered as they said it wouldn’t cure me and all scans were unclear. My psa is in excess of 500 now yet I feel fine and am working. I expect I’ll get ill quite soon and then Probably start HT which I’ve totally not wanted having regained a sex life. It seems your hubby has a very aggressive form to be moving so fast and not responding well. Best wishes to both of you

If life gives you lemons , then make lemonade

User
Posted 25 Jun 2020 at 12:18

Thanks Chris

We haven’t had any indication of whereabouts the spread is, a scan back in March didn’t pick any areas up. Prior to RT, scans showed spread to the prostate bed and lymph nodes, these all appeared to be dealt with by the radiotherapy as they no longer showed in the scan done at the end of the treatment.

The consultant now thinks perhaps the back pain and rib pain he’s developed may not be caused by the Enzalutamide as initially thought, he’s now waiting to hear when a further scan can be done. Hopefully won’t be too long a wait.

User
Posted 25 Jun 2020 at 12:39

White Swan,

I read it in full, and I'm really sorry for the two of you and it seems very unfair. I don't have any useful comments to make, but thought I needed to say I'm listening and thinking of you.

User
Posted 25 Jun 2020 at 14:44
Desperately sorry to read your story. Many men can live out their entire lives with prostate cancer and die with it rather than from it, but for others it can be a very cruel disease that takes loved ones away in a matter of months. When the end does come it generally comes quickly - a matter of weeks - so now would be a good time to get all Steve's affairs in order while he is still feeling well.

I don't really know what else to say other than that this is a place where people will understand your situation. Unfortunately all we can really offer is sympathy.

Very best wishes,

Chris

User
Posted 25 Jun 2020 at 20:19

Hi White Swan

I can’t offer anything other than to say I read your thread twice and wanted to say I felt your pain and also the love coming through your words.

Using this forum as a journal makes a lot of sense to me as it combines the often advised ‘writing it down to prevent holding it within’ strategy with the added advantage of the ‘journal’ writing back to share experience (of which there is much on this forum) or just care (for those without experience).

Steve clearly is much loved and that shines through your post.

 

Clare

User
Posted 25 Jun 2020 at 20:21

I am so sorry to read what has happened, nothing is fair but never give up and please write whenever you feel about whatever you feel as we all care here. 

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 Jun 2020 at 21:43
Just a small amend needed to help people respond appropriately to your post White Swan - your husband / partner's post-op PSA was 0.88, not 8.

I wouldn't write off the possibility of chemo without talking to the consultant about it properly- there are many different chemos and the one for prostate cancer tends not to be as vicious as the images of 'chemo' that we often see on the TV. In fact, some people have only very mild side effects from docetaxel; my father-in-law breezed through it and his major grumble was not being allowed to go to the pub on days 5-10 ... others here have continued to work full time through docetaxel. He could perhaps start it and then stop if he is one of those more affected - research shows that even one or two sessions of docetaxel can make the enzalutimide more effective.

Finally, has anyone talked to him about applying for PIP? There is a fast track route for people deemed to have less than 6 months to live although many oncologists / nurse specialists will sign the application if there is a doubt about surviving 12 months. The money is to help you pay for things that you probably don't need now but might in the future - practical items if he becomes less mobile, night sitters or home care assistance in the final stages, some of the equipment that the local authority either can't provide or there are waiting lists for (specialist bed, for example), that kind of thing. Staff at your local hospice, the Macmillan nurse or Maggie's centre (if there is one near you) can help you to complete the application if he is eligible.

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

User
Posted 25 Jun 2020 at 22:45
So sad to read your update Fran, looks like Steve has a particularly virulent strain of the disease.

It seems odd that the scans can't pick up the precise areas of the metastatis, got to be worth talking to the Onco again for his views.

Don't dismiss chemotherapy as a further treatment, got to be worth a try.

Finally as Lyn mentioned ask your specialist nurse to urgently complete a DS1500 as this will give fast track entitlement to PIP.

Don't forget we're all here to help on this forum.

John

User
Posted 26 Jun 2020 at 00:02

If you are 100% confident that your expert is right and it’s months, all I can say as someone who went through chemo is that it is an unknown gamble which, if it doesn’t help, will consign those remaining months to ones of absolute fatigue and a diminution of QOL. Think carefully. Your account was beautifully written and very moving.

my love to you both

Bazza

Edited by member 26 Jun 2020 at 00:03  | Reason: Typo

User
Posted 26 Jun 2020 at 11:42

Hi White Swan, That's a beautifully written piece that made me deeply wish I could do more.  

There isn't much in your profile and perhaps you could paste that note in.  If you're looking for a more personal way to do it, you could do a free Google Sites website and link it on your profile, I did that.

I've no experience on this but it seems that the operation removed a lot of it, if the psa went down to 0.88, as Lyn has written.  A pre-op psa of 7 would normally be re-assuring.  Although the psa increase since then has been surprisingly fast. 

We're all different but I can't help thinking I'd have a go at every treatment and decide then whether to continue with it.

Please keep us updated.

Best wishes,
Peter

User
Posted 26 Jun 2020 at 17:22
Hi White Swan

Sorry I can't offer any real advice, but try to make some more memories together while you can.

Best wishes

Cheers

Bill

User
Posted 26 Jun 2020 at 21:59

Thanks Peter, I’ve updated my profile so I’m a bit less anonymous! 

Tonight we’re researching nutrition (well, I am, Steve’s asleep) after he spoke to a close friend from many years ago who works as a holistic therapist and who is a huge advocate of reducing all stress on the body. Out with processed foods, sugars, anything non organic. You get the picture.

I have a feeling that juicing and raw food is looming on the horizon, and that comforting cake and wine may be ditched for the interim. That’s fine, it won’t hurt and might help. Will keep you posted. 

User
Posted 26 Jun 2020 at 22:14
Sorry but I’d detest the thought of no wine and raw food and being denied all the things that I love in life on a whim really. I’ve not changed my life in any way at all , whether that be right or wrong , but who knows if it has changed anything after 5 yrs. No cheese or wine or red meat or sausages etc then I’d be blo**dy more miserable.

Just saying sorry I truly am , but if things are as bad as you say then diet is truly unlikely to make any difference now at this stage. Sending best wishes

If life gives you lemons , then make lemonade

User
Posted 26 Jun 2020 at 22:38

Chris I totally get that.

I think that we’re in completely unknown territory, and I’m being guided by Steve, he currently feels that a radical change in diet / alcohol / sugar intake is worth a try, I’ll go with whatever he feels is the right thing to do.

It probably won’t make any difference at this stage, but if there’s even a minuscule chance of him feeling he’s done everything he can to try and slow the progress of the cancer then I’ll willingly quit all the things I love to eat / drink for the time being. On the up side, I might shift a few pounds of middle aged flab. And, if there’s no difference in outcome, at least he will feel some sense of autonomy over choices of food and drink. I don’t have any answers, but I’m just going with the flow at the moment.

Edited by member 26 Jun 2020 at 22:47  | Reason: Not specified

User
Posted 26 Jun 2020 at 22:54
I get that ! I’m sorry ! I’ve not walked in his or your shoes yet i guess although life has been tough this last five years. I can only wish you time if that’s what you want. I think I made my mind up 4 yrs ago on future treatment if I was incurable which I am. I’ll see how it pans out. That’s all we can do , but am glad with my choice so far.

If life gives you lemons , then make lemonade

User
Posted 26 Jun 2020 at 23:11

Fran

At my last Onco meeting in March I was told my liver function was high and my Onco asked if I'd drank an increased amount of alcohol.

I explained I'd just returned from an all inclusive Cruise and hammered a South African wine for 10 nights called chocolate block.

He laughed and said don't worry your liver will surpass your cancer, enjoy the red wine and I do.

No right or wrongs in the stage 4 cancer club.

John

User
Posted 27 Jun 2020 at 15:17

Hi,

Diet can help some aspects but I wouldn't get too carried away.  You spoke of chemo and quality of life.  Diet can make you happy or it can be a drudge.  Even so I took a few moves in that direction.

Drinking:

When I was diagnosed I stopped drinking alcohol for 6 months.  I found it made me anxious about my illness in the night and day after.   I didn't miss it for a long time and that was helped because I knew that anxious feeling wasn't good.

Now I limit myself to 2 nights and then only have a couple of bottles of beer or half a bottle of wine.  Sometimes I hardly know I've had any and wake up fine.

I only ever drank at night and usually in the house.  If you can get past those hours between say 7 and 8.30 when you normally start drinking you've cracked it.  It's passing that window that's so hard.   I try not to drink after 9pm anyway because you end up getting out of bed in the night.  To get over it at 7pm I had some strange drinks, one was Three Ginger Tea by Pukkah.   I tried quite a few of those.  There's a big range of tea like drinks that you have without milk.

The weekly limit is about a bottle of wine according to Public Health, and you should drink that across several nights.  I used to drink more than that in one night before I was diagnosed, although I never drank more than 3 nights a week.  There is alcoholism in the family and I need to prove I can stop.

Juices:

Be careful with the juices and blending, especially fruit, they can give you a sugar rush which isn't good.  You should drink them very slowly.

Diet:

Low fat, low sugar, careful with salt, multi-coloured veg, no red meat, 5 veg, 5 fruit, nuts and no snacks between meals are as far as it needs go.   That's hard enough.

Fasting:

There are also theories about fasting.  Cutting right back for 2 days in the week makes the body think it's short of food and it starts defending itself which boosts your immune system.  As a mini fast having nothing at all for 12 hours a day say 8pm to 8am can create some of those effects.   I know of a reputable journalist who swears by fasting as aiding an auto-immune disease she had I wouldn't get too carried away with it for Prostate Cancer.

Vitamin D:

Vitamin D3 is the preferred Vit D.  It is said to improve the immune system and bone strength.  Many people in northern latitudes are deficient.  Vitamin D3 tablets might be worth considering.

In my opinion these things can help a bit and can make you healthier but I wouldn't get carried away about diet as anything other than possibly providing an improvement to certain aspects that might help the body tolerate or perhaps fight the disease.

His mental life is important and enjoying himself.

Good luck with that,
Peter

 

 
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