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User
Posted 20 Nov 2024 at 17:58

Hi, my name is Sandra but I'm mostly called Sanje/San. My husband is already a member and has found the information and the people on this site very helpful.

He is currently awaiting his biopsy results. 

I've joined so that I may research how others; especially partners, have dealt with testing, diagnosis and treatments. Fore warned is fore armed they say. 

Can I thank everyone in advance for their past, past and future posts and information.

Sanje

User
Posted 21 Nov 2024 at 07:53

Morning folk.

I've always thought it must be worse for partners than the patient. If my wife had cancer I'd struggle far more to deal with it than I would having it myself. I'd rather be in my shoes than hers. 

Our disease, because it often effects sexual intimacy, is particularly difficult to deal with and puts additional pressure on relationships.

My wife initially struggled with the effects the disease had on me. I'd become even grumpier than pre diagnosis and a bit morose. At one point we thought we'd need professional help. We found that it must be a common problem, because one of our local hospitals offered group support sessions exclusively for partners.

Good luck to you all.  We'd be lost without you.👍

Edited by member 21 Nov 2024 at 08:15  | Reason: Additional text

User
Posted 23 Nov 2024 at 09:03
Hi sanje, I’ve been where you are 9 yrs ago . Same stats 4+5 Gleason 23 ,spread to lymph nodes . We thought Gary would be dead within months ! Try not to google,as a lot of the info is dated and treatments have progressed enormously in that time . Gary was put straight onto prosap injections and given 6 rounds of chemo . He was chosen to go on a trial which also ment Enzo and Abi combination. He’s 64 now and still working in construction,bit slower pace ! The trial ended and Enzo was removed but he’s still on the other drugs . Straight away his PSA became undetectable and has stayed there over the last 9 yrs .i have good days and bad days but most of the time it really doesn’t enter my thoughts ,maybe we’ve been ‘lucky ‘ . It helps to keep things as normal as possible and still look forward to holidays and events .

Good luck in your journey.

We are all here if you or hubby need a shoulder . Gary has never read anything about the disease so I drip feed him little bits of info into conversations which does seem to go in .

Best wishes

Debby .

User
Posted 21 Nov 2024 at 02:15

Hi Sanje

Welcome to the “supporters’ club”! So sorry you’re in this boat too. This forum has helped me cope with some of the very worst weeks/months of my life, and I’m sure you’ll find the same.

My husband isn’t that much further along this path than yours - he got his biopsy results 11 weeks ago. Mentally we both found that the “wait and see” stage you’re at now was the very worst part so far. My husband is T3b, Gleason 4+5 so he wasn’t offered surgery, but immediately began hormone therapy, with radiotherapy planned for early in the new year. (See my bio for details if you like). The oncologist described the cancer as “high risk and aggressive”, which was scary, but then went on to say the treatment is a “curative path”, which was hugely reassuring. We found the start of the treatment, while daunting, gave us both quite a mental boost as it marked the start of the fight back.

Unlike your husband, mine didn’t join the forum as he felt rather overwhelmed by everything, but I read everything I could find so that the terminology, treatment options, side effects etc didn’t floor me and I was in a good position to be able to support my OH. Eg one day he had the horrible experience of being served in a bakery, trying to ask for strawberry tarts and the only words that would come were “cheese slices”, no matter how hard he tried, and he was so embarrassed when the woman serving asked if he was ok and was clearly very concerned for him. He was really upset and thought the cancer had maybe spread to the brain!!! When he came home and told me I was able to reassure him that it would just be brain fog - another little gift from HT!! He was able to laugh at himself and hasn’t panicked like that again.

For us, my main “jobs” have been to keep myself informed on what may lie ahead, to plan fun stuff for us to do at least once a week, and to try to make things feel as normal and do-able as possible. We also started working with a personal trainer in a local gym - something I never thought either of us would do - as it has helped him to build up his muscles to combat the muscle wastage, joint pain and fatigue that HT cause. Doing it together made all the difference to him and we are amazed to find we rather enjoy it! Mentally it has helped a lot too, as he has felt that he is taking control of that aspect of the side effects.

Feel free to get in touch if there’s anything at all you think I can answer. Everyone copes differently but I certainly found it helped to draw on the experience of others, particularly at the horrible stage you are at right now.

Take care, and wishing you both the very best of luck. Do keep us informed of how you get on. 
Xx

Edited by member 21 Nov 2024 at 02:19  | Reason: Not specified

User
Posted 20 Nov 2024 at 17:58

Hi, my name is Sandra but I'm mostly called Sanje/San. My husband is already a member and has found the information and the people on this site very helpful.

He is currently awaiting his biopsy results. 

I've joined so that I may research how others; especially partners, have dealt with testing, diagnosis and treatments. Fore warned is fore armed they say. 

Can I thank everyone in advance for their past, past and future posts and information.

Sanje

User
Posted 20 Nov 2024 at 23:41
Hi Sanje

Welcome to the forum…although no one wants to be here, once you are in the situation we are all in, it really is a godsend!

Like you, I am a wife of a husband who has gone through/going through this awful journey! Feel free to read our bio.

I’m sure you are both worrying about the results, that’s only natural…I really hope they come back with a good scenario for you both. Whatever the result, when you e had time to process, just ask away any questions on here, someone will always answer and share experience with you.

Take care

Debbie

User
Posted 22 Nov 2024 at 16:01

Hi Sanje,

Both my wife and I have recently had cancer so I have been on both sides of the equation. Firstly I hope that your husbands biopsy proves negative and you can get back to your life without these complications but in case not - lessons I have learnt.

1. The waiting is the worst. You come to terms with the diagnosis quite quickly but not knowing what you are facing is soul destroying.

2. You will have good and bad days so be understanding when your partner has a bad day. We lash out at the ones we love most.

3. It is far better to talk about it than to bottle it up.

4. When you have meetings take notes it is amazing the things that you forget or how your mind can twist the actual words. I often write down the actual words used by the specialist.

5. Better to laugh than cry, what some might think is dark humour makes us laugh.

6. Avoid Dr Google, this website is a good resource although a bit biased as it is tends to be those of us who have longer issues rather than the success stories that move on quickly who reply. The person who knows your individual situation best is your specialist so place most emphasis on what they say.

7. Keep yourself busy distractions are great. 

8. It is not all bad some good can come from this journey, stronger relationships with partners, family and friends, reassessing what is important as well as better empathy and understanding have all been benefits for me.

Good luck and fingers crossed for a negative biopsy

User
Posted 22 Nov 2024 at 16:40

Feeling very grateful and would like to thank the lovely people who have kindly written back to me on this forum. Their stories and advice have been a great help and helped to 'normalise' the seesaw of feelings that I'm are going through at the moment. I will continue to use this website if my husband's results don't go the way we would like.

Wishing everyone massive strength in these uncertain times x

 

 

Show Most Thanked Posts
User
Posted 20 Nov 2024 at 23:41
Hi Sanje

Welcome to the forum…although no one wants to be here, once you are in the situation we are all in, it really is a godsend!

Like you, I am a wife of a husband who has gone through/going through this awful journey! Feel free to read our bio.

I’m sure you are both worrying about the results, that’s only natural…I really hope they come back with a good scenario for you both. Whatever the result, when you e had time to process, just ask away any questions on here, someone will always answer and share experience with you.

Take care

Debbie

User
Posted 21 Nov 2024 at 02:15

Hi Sanje

Welcome to the “supporters’ club”! So sorry you’re in this boat too. This forum has helped me cope with some of the very worst weeks/months of my life, and I’m sure you’ll find the same.

My husband isn’t that much further along this path than yours - he got his biopsy results 11 weeks ago. Mentally we both found that the “wait and see” stage you’re at now was the very worst part so far. My husband is T3b, Gleason 4+5 so he wasn’t offered surgery, but immediately began hormone therapy, with radiotherapy planned for early in the new year. (See my bio for details if you like). The oncologist described the cancer as “high risk and aggressive”, which was scary, but then went on to say the treatment is a “curative path”, which was hugely reassuring. We found the start of the treatment, while daunting, gave us both quite a mental boost as it marked the start of the fight back.

Unlike your husband, mine didn’t join the forum as he felt rather overwhelmed by everything, but I read everything I could find so that the terminology, treatment options, side effects etc didn’t floor me and I was in a good position to be able to support my OH. Eg one day he had the horrible experience of being served in a bakery, trying to ask for strawberry tarts and the only words that would come were “cheese slices”, no matter how hard he tried, and he was so embarrassed when the woman serving asked if he was ok and was clearly very concerned for him. He was really upset and thought the cancer had maybe spread to the brain!!! When he came home and told me I was able to reassure him that it would just be brain fog - another little gift from HT!! He was able to laugh at himself and hasn’t panicked like that again.

For us, my main “jobs” have been to keep myself informed on what may lie ahead, to plan fun stuff for us to do at least once a week, and to try to make things feel as normal and do-able as possible. We also started working with a personal trainer in a local gym - something I never thought either of us would do - as it has helped him to build up his muscles to combat the muscle wastage, joint pain and fatigue that HT cause. Doing it together made all the difference to him and we are amazed to find we rather enjoy it! Mentally it has helped a lot too, as he has felt that he is taking control of that aspect of the side effects.

Feel free to get in touch if there’s anything at all you think I can answer. Everyone copes differently but I certainly found it helped to draw on the experience of others, particularly at the horrible stage you are at right now.

Take care, and wishing you both the very best of luck. Do keep us informed of how you get on. 
Xx

Edited by member 21 Nov 2024 at 02:19  | Reason: Not specified

User
Posted 21 Nov 2024 at 07:53

Morning folk.

I've always thought it must be worse for partners than the patient. If my wife had cancer I'd struggle far more to deal with it than I would having it myself. I'd rather be in my shoes than hers. 

Our disease, because it often effects sexual intimacy, is particularly difficult to deal with and puts additional pressure on relationships.

My wife initially struggled with the effects the disease had on me. I'd become even grumpier than pre diagnosis and a bit morose. At one point we thought we'd need professional help. We found that it must be a common problem, because one of our local hospitals offered group support sessions exclusively for partners.

Good luck to you all.  We'd be lost without you.👍

Edited by member 21 Nov 2024 at 08:15  | Reason: Additional text

User
Posted 22 Nov 2024 at 16:01

Hi Sanje,

Both my wife and I have recently had cancer so I have been on both sides of the equation. Firstly I hope that your husbands biopsy proves negative and you can get back to your life without these complications but in case not - lessons I have learnt.

1. The waiting is the worst. You come to terms with the diagnosis quite quickly but not knowing what you are facing is soul destroying.

2. You will have good and bad days so be understanding when your partner has a bad day. We lash out at the ones we love most.

3. It is far better to talk about it than to bottle it up.

4. When you have meetings take notes it is amazing the things that you forget or how your mind can twist the actual words. I often write down the actual words used by the specialist.

5. Better to laugh than cry, what some might think is dark humour makes us laugh.

6. Avoid Dr Google, this website is a good resource although a bit biased as it is tends to be those of us who have longer issues rather than the success stories that move on quickly who reply. The person who knows your individual situation best is your specialist so place most emphasis on what they say.

7. Keep yourself busy distractions are great. 

8. It is not all bad some good can come from this journey, stronger relationships with partners, family and friends, reassessing what is important as well as better empathy and understanding have all been benefits for me.

Good luck and fingers crossed for a negative biopsy

User
Posted 22 Nov 2024 at 16:40

Feeling very grateful and would like to thank the lovely people who have kindly written back to me on this forum. Their stories and advice have been a great help and helped to 'normalise' the seesaw of feelings that I'm are going through at the moment. I will continue to use this website if my husband's results don't go the way we would like.

Wishing everyone massive strength in these uncertain times x

 

 

User
Posted 23 Nov 2024 at 09:03
Hi sanje, I’ve been where you are 9 yrs ago . Same stats 4+5 Gleason 23 ,spread to lymph nodes . We thought Gary would be dead within months ! Try not to google,as a lot of the info is dated and treatments have progressed enormously in that time . Gary was put straight onto prosap injections and given 6 rounds of chemo . He was chosen to go on a trial which also ment Enzo and Abi combination. He’s 64 now and still working in construction,bit slower pace ! The trial ended and Enzo was removed but he’s still on the other drugs . Straight away his PSA became undetectable and has stayed there over the last 9 yrs .i have good days and bad days but most of the time it really doesn’t enter my thoughts ,maybe we’ve been ‘lucky ‘ . It helps to keep things as normal as possible and still look forward to holidays and events .

Good luck in your journey.

We are all here if you or hubby need a shoulder . Gary has never read anything about the disease so I drip feed him little bits of info into conversations which does seem to go in .

Best wishes

Debby .

 
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