I'm interested in conversations about and I want to talk about
Know exactly what you want?
Show search

Notification

Error

One year post diagnosis.

Email this conversation Print this conversation
User
Posted 17 Apr 2023 at 06:12

Around a year ago I was diagnosed with prostate cancer, aged 53.   Immediately of course I looked here for information and began to educate myself on this disease.  After all the usual diagnostics tests - examination, biopsies, scans etc I was told I had advanced prostate cancer.  Staging - T3b, N1 and M1b and Gleason 9 (5 and 4). All cores were positive.

My care was basically moved to oncology in July 2022.

The treatment path was I think the standard now for someone in my situation - double hormones, steroids and regular checks of PSA with a view towards RT when PSA came under control.  I had a moderate response to the hormones for 5 months with my PSA falling to a nadir of 4 however in Nov 2022 a test showed no fall or rise and then the next test showed a rise.  In January 2023 the PSA level had risen sharply and thus I was considered to  be a case of castration  resistant Prostate cancer.  Abiraterone was stopped and I moved to what has been described as, palliative chemotherapy, 10 sessions planned.  Unfortunately the PSA level still rises and at last reading was 538.  I am waiting on a set of scans - bone, ct and mri to determine the next steps from here.

While my progress and treatment is interesting  what I have learned in the last year about cancer and its impact is more interesting to me.  Initially I think the shock takes you through the first few months and there is little processing of what is going on.  Only after a year do I feel I can really process the “journey” I have been on.  I would say I have learned a number of things which may or not be helpful to other people.

  1. Homogeneity -  When we talk about cancer, and of course prostate cancer in this case, we are not talking about a homogenous disease.  there are so many different stages, levels and pathways that to talk cancer and try and group in a single group is literally impossible.  This is something I have took a good while to grasp! I found prostate cancer to be a difficult diagnosis for this very reason as i think it is well known  that it is a slow growing disease and that men will die it with it rather than because of it.  I am pleased to say that this is true in most cases. It is a curable disease. And I am so grateful for the many men who are cured and monitored who live long and healthy life’s.   However if you are unlucky and have a more aggressive rapid type of PCa be prepared for people to misunderstand the seriousness of your diagnosis.  It is draining at times and can cause some problems with friends, family, work, life insurance and pensions (not bloody travel insurance though).  I do have a wonderful MDT however and they have supported me through these conversations 100% and have now settled this with everyone who needs to know. Of course this also means all these learning points are mine, they may be meaningless for you! 

  2. Waiting -  One of the biggest and most unexpected learnings from this is the joy of waiting.  This year has felt like one massive process of waiting on - the next blood test, the next scan, the next appointment etc etc etc.  This of course is the nature of the disease. However I have started to realise that while you are waiting, the clock is ticking.  So it is crucially important to be living while waiting otherwise time just ticks away while you wait on the next cancer related thing.  Life needs to be lived.

  3. Family and friends - I am not alone with this however that means that while I am supported they are impacted as hard as I am.  I have very strong and close family and friends and even in them I have seen them crack and bend under the strain.  In many ways it’s easier for me as I have the lived experience. They have to rely on my reports as being honest and not just being to be protective of them.  I do try and be as honest as I can, I try and use humour to soften the blows at times. I can safely say I don’t think I would have been able to do this this year without the support of my closest family and friend but I worry about the impact on them!

  4. Acceptance but not lying down - I was really bad for just trying to keep doing what i did despite the diagnosis or any treatments.  I was told by those close to me to slow down, accept I needed some rest and also that of course at times I would have pain or side effects.  I felt at times that by accepting this I would be welcoming the disease and it was the beginning of the end.  In fact acceptance has allowed me to recharge my batteries when I need to so that life can be lived when it needs to.

  5. There is not a lot that really matters -  This might be one of those rather philosophical things that we all really know but that only a life limiting illness can really teach us.  But it is true, the things I stressed about, worried about or gave mental energy to before cancer phone call compared to post cancer phone call are a world apart.  Of course they matter but when all is said and done they don’t really matter.

  6. Doom scrolling - One thing I have realised is that there is little value in google searching “prognosis following advanced cancer diagnosis”.  It doesn’t take you anywhere good! It is however likely to happen so with that in mind see point number 1!

  7. New friends and opportunites - It seems weird to say that this diagnosis brings positives.  But it does.  In the last year I have made new friends who are now quite close to me.  I would have never met them but for this diagnosis.  I have also had a number of new opportunities and experiences that would only have happened as a result of this diagnosis.  I have also had to stop working etc so that has opened up opportunities for other things to happen that, at this age, would have never happened.  So perhaps it’s a good learning point to end on.  There are positives from all of this, they can be hard to see sometimes but they are there and will come.

So I am a year in and of course hope, pray and of course expect to be back here next year with a report on year 2.  As it stands I am waiting on some genetic testing which may open up some treatments and as I wrote earlier I am waiting on scans to determine the path ahead with chemo.  (See learning point 2 lol)

I have 2 weekends coming up that are full of friends and family socialising and then a trip away to the outer Hebrides to recharge in early May. (Learning 3 and 4)

I hope you are all well.  For those on a curative pathway please stay cancer free, I send all my positivity.  For those not let’s hang on in for as long as possible.  And for those just joining this club, don’t panic. Stay informed and keep talking to those closest to you.  You will prevail.

So that is my learning after a year of advanced PCa, feel free to add yours.  Thanks in advance for taking the time to read and I do wish you all well.

Best wishes

Michael

 

Edited by member 17 Apr 2023 at 08:17  | Reason: Not specified

User
Posted 17 Apr 2023 at 06:12

Around a year ago I was diagnosed with prostate cancer, aged 53.   Immediately of course I looked here for information and began to educate myself on this disease.  After all the usual diagnostics tests - examination, biopsies, scans etc I was told I had advanced prostate cancer.  Staging - T3b, N1 and M1b and Gleason 9 (5 and 4). All cores were positive.

My care was basically moved to oncology in July 2022.

The treatment path was I think the standard now for someone in my situation - double hormones, steroids and regular checks of PSA with a view towards RT when PSA came under control.  I had a moderate response to the hormones for 5 months with my PSA falling to a nadir of 4 however in Nov 2022 a test showed no fall or rise and then the next test showed a rise.  In January 2023 the PSA level had risen sharply and thus I was considered to  be a case of castration  resistant Prostate cancer.  Abiraterone was stopped and I moved to what has been described as, palliative chemotherapy, 10 sessions planned.  Unfortunately the PSA level still rises and at last reading was 538.  I am waiting on a set of scans - bone, ct and mri to determine the next steps from here.

While my progress and treatment is interesting  what I have learned in the last year about cancer and its impact is more interesting to me.  Initially I think the shock takes you through the first few months and there is little processing of what is going on.  Only after a year do I feel I can really process the “journey” I have been on.  I would say I have learned a number of things which may or not be helpful to other people.

  1. Homogeneity -  When we talk about cancer, and of course prostate cancer in this case, we are not talking about a homogenous disease.  there are so many different stages, levels and pathways that to talk cancer and try and group in a single group is literally impossible.  This is something I have took a good while to grasp! I found prostate cancer to be a difficult diagnosis for this very reason as i think it is well known  that it is a slow growing disease and that men will die it with it rather than because of it.  I am pleased to say that this is true in most cases. It is a curable disease. And I am so grateful for the many men who are cured and monitored who live long and healthy life’s.   However if you are unlucky and have a more aggressive rapid type of PCa be prepared for people to misunderstand the seriousness of your diagnosis.  It is draining at times and can cause some problems with friends, family, work, life insurance and pensions (not bloody travel insurance though).  I do have a wonderful MDT however and they have supported me through these conversations 100% and have now settled this with everyone who needs to know. Of course this also means all these learning points are mine, they may be meaningless for you! 

  2. Waiting -  One of the biggest and most unexpected learnings from this is the joy of waiting.  This year has felt like one massive process of waiting on - the next blood test, the next scan, the next appointment etc etc etc.  This of course is the nature of the disease. However I have started to realise that while you are waiting, the clock is ticking.  So it is crucially important to be living while waiting otherwise time just ticks away while you wait on the next cancer related thing.  Life needs to be lived.

  3. Family and friends - I am not alone with this however that means that while I am supported they are impacted as hard as I am.  I have very strong and close family and friends and even in them I have seen them crack and bend under the strain.  In many ways it’s easier for me as I have the lived experience. They have to rely on my reports as being honest and not just being to be protective of them.  I do try and be as honest as I can, I try and use humour to soften the blows at times. I can safely say I don’t think I would have been able to do this this year without the support of my closest family and friend but I worry about the impact on them!

  4. Acceptance but not lying down - I was really bad for just trying to keep doing what i did despite the diagnosis or any treatments.  I was told by those close to me to slow down, accept I needed some rest and also that of course at times I would have pain or side effects.  I felt at times that by accepting this I would be welcoming the disease and it was the beginning of the end.  In fact acceptance has allowed me to recharge my batteries when I need to so that life can be lived when it needs to.

  5. There is not a lot that really matters -  This might be one of those rather philosophical things that we all really know but that only a life limiting illness can really teach us.  But it is true, the things I stressed about, worried about or gave mental energy to before cancer phone call compared to post cancer phone call are a world apart.  Of course they matter but when all is said and done they don’t really matter.

  6. Doom scrolling - One thing I have realised is that there is little value in google searching “prognosis following advanced cancer diagnosis”.  It doesn’t take you anywhere good! It is however likely to happen so with that in mind see point number 1!

  7. New friends and opportunites - It seems weird to say that this diagnosis brings positives.  But it does.  In the last year I have made new friends who are now quite close to me.  I would have never met them but for this diagnosis.  I have also had a number of new opportunities and experiences that would only have happened as a result of this diagnosis.  I have also had to stop working etc so that has opened up opportunities for other things to happen that, at this age, would have never happened.  So perhaps it’s a good learning point to end on.  There are positives from all of this, they can be hard to see sometimes but they are there and will come.

So I am a year in and of course hope, pray and of course expect to be back here next year with a report on year 2.  As it stands I am waiting on some genetic testing which may open up some treatments and as I wrote earlier I am waiting on scans to determine the path ahead with chemo.  (See learning point 2 lol)

I have 2 weekends coming up that are full of friends and family socialising and then a trip away to the outer Hebrides to recharge in early May. (Learning 3 and 4)

I hope you are all well.  For those on a curative pathway please stay cancer free, I send all my positivity.  For those not let’s hang on in for as long as possible.  And for those just joining this club, don’t panic. Stay informed and keep talking to those closest to you.  You will prevail.

So that is my learning after a year of advanced PCa, feel free to add yours.  Thanks in advance for taking the time to read and I do wish you all well.

Best wishes

Michael

 

Edited by member 17 Apr 2023 at 08:17  | Reason: Not specified

User
Posted 27 Jan 2024 at 06:38

Hi All, Michael became a friend through this forum and we PM'd quite often. Sadly he lost his battle in July 2023, confirmed by his lovely wife. He had a huge positive impact on me and taught me how to get through this journey whilst smelling the roses along the way. An amazing guy, who I wish I had met in person. Rest in peace Michael, your legacy lives on through this post and i am sure in many other ways. David

Edited by member 27 Jan 2024 at 06:39  | Reason: Not specified

User
Posted 26 Jan 2024 at 18:10

Hey Michael,

Just thought id drop in again in what I think, is easily one of the greatest posts to have been written on here in my 2 year journey with this thing.

I hope you are more than well my man.

Best,

Jamie.

User
Posted 26 Jan 2024 at 20:25

Hear hear to that!

User
Posted 17 Apr 2023 at 07:13

So sorry to hear about your husband GMKY…good luck to him and you.  All the support in the world from me 

Michael x x 

User
Posted 17 Apr 2023 at 08:23

Thank you for your kind comment Derek.  I have been reading about your RT journey and I think your posts will be really helpful to others.  I don’t know if I will ever go down the RT route now but I have learned a lot reading your experience so thank you for sharing, it will be handy if I do get any RT.  

Good luck with it and I hope you have few side effects Derek and that it keeps you stable and effectively cancer free for as long as possible. 

Sending positive vibes 

Michael 

User
Posted 17 Apr 2023 at 11:12

Hi Jamie, thank you so much for the feedback and hope you are doing well my friend.  I can’t wait for a stroll along Luskentyre beach.  I have been before and it is, in my opinion, surely one of the best beaches in the world. This is with the distinct advantage that there is no one, or very few people on it lol! 

Take care, stay well and stay strong 

Cheers 

Michael 

User
Posted 17 Apr 2023 at 14:32

Thank you ido4 for taking the time to give such a nice comment.  I hope things go well for you. Sending you solidarity and strength. 

Best wishes

Michael 

User
Posted 19 Apr 2023 at 11:01

Thank you so much for taking the time to reply Melissa and i have everything crossed that your husbands PSA plays ball and the drugs keep working.  I am sure they will for now.  Sorry I hope I didn’t mean to upset you or anyone.  I am hopeful that things will turn around for me and that there is a treatment path ahead.  I like to stay confident this will be the case. We all have to have that wee bit of hope I think :) 

Look after you, you are far from a Fraud .  The impact on family and friends is so high and sometimes you are the ones who are forgotten in all of this. 

Take care 

Best wishes to you both 

Michael x x x x

User
Posted 19 Apr 2023 at 19:41

Hi Kerm63, thank you so much for the kind feedback and good luck on your progress through this disease.  I do hope your bone scan is clear when you get the results. I have my fingers crossed for that.  Your numbers are similar to mine but as you can see from my response to Maud there is no universal repsonse deadening on numbers.  Mike and I were very similar and he had a better response than me.  I am hoping this is the case for you David.  Sending positive vibes. I am glad you have started on a treatment pathway already and this will give you the best way forward I think.  

Again thank you for your response and good luck with things. If I can be of any help please feel free to drop me a message.  So sorry you are in this silly club! 

Best wishes

Michael 

User
Posted 27 Jan 2024 at 00:25

Hi Michael,

Your post whilst heartbreaking, is very inspiring indeed. You certainly brought tears to my eyes. Its so easy to gloss over the impact of this, but in your own way that hit so many levels of life.

My demon is not as advanced, but 7 months AS on from diagnosis, it does eat away psychologically. It feels like I am walking round with a volcano awaiting to erupt.

My first instinct is to shield and protect those around me from this, but when serious health concerns inevitably lead to re-assessment of life and longevity, your loved ones do notice those subtle signs of change. Sure LPAs and Wills are sharp edged necessities, but the little things like me writing a burgeoning novel (sort of secretly late at night) on how to maintain the house and take over all the duties we take for granted. My pathetic not so convincing efforts to introduce family members to what I might do or contacts I have. The changing of the guard almost in case the worst happens. 

Above all we must make the most of life in the best way possible, because it does go on. 

I truly wish you and your family the best for the years ahead. Take care, Mark.

User
Posted 27 Jan 2024 at 01:54
Sadly, I don't think Michael is with us anymore. He was on palliative care in June 2023 and hasn't logged in since July 2023.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

Show Most Thanked Posts
User
Posted 17 Apr 2023 at 07:09

My husband has recently been diagnosed with advanced prostrate cancer - T4 N1 M1 

I can relate entirely to your thoughts, well meaning friends saying oh you’ll be fine, they can do so much these days etc etc. I know they mean well but …….

He starts chemo tomorrow, long road ahead. The letters from the medics stating he is aware that care is palliative rocked us  - just seeing those words in black and white.

Sending love and best wishes to you x

User
Posted 17 Apr 2023 at 07:13

So sorry to hear about your husband GMKY…good luck to him and you.  All the support in the world from me 

Michael x x 

User
Posted 17 Apr 2023 at 08:00

Michael, your words and wisdom have really touched me this morning,  and what GMKY and you say is so true. My diagnosis is not nearly as severe as yours but when people say ‘You look so well’ and ‘’You’ll be fine’ it does get to you. Yes, I look and feel good despite the fact I’ve got a killer disease inside of me, but I’ve come to realise that people just don’t know what to say to you when you mention the big C word.

Best wishes and Good luck to all of you.

Derek 

User
Posted 17 Apr 2023 at 08:23

Thank you for your kind comment Derek.  I have been reading about your RT journey and I think your posts will be really helpful to others.  I don’t know if I will ever go down the RT route now but I have learned a lot reading your experience so thank you for sharing, it will be handy if I do get any RT.  

Good luck with it and I hope you have few side effects Derek and that it keeps you stable and effectively cancer free for as long as possible. 

Sending positive vibes 

Michael 

User
Posted 17 Apr 2023 at 10:55

Brilliant post Michael that im sure so many on here can relate to.Including myself.

Stay strong brother and be sure to enjoy those Outer Hebridean beaches.

 

Jamie

User
Posted 17 Apr 2023 at 11:12

Hi Jamie, thank you so much for the feedback and hope you are doing well my friend.  I can’t wait for a stroll along Luskentyre beach.  I have been before and it is, in my opinion, surely one of the best beaches in the world. This is with the distinct advantage that there is no one, or very few people on it lol! 

Take care, stay well and stay strong 

Cheers 

Michael 

User
Posted 17 Apr 2023 at 13:12

Great post Michael touching on so many of the issues that impact us. I hope you find a new treatment path and I see you posting for a long time to come. 

Ido4

User
Posted 17 Apr 2023 at 13:54

Terrific post Michael. The bit about Waiting is right on the money: there are so many 3-week waits for test, results, consultation, or for action, that it is easy to slip into wishing your time away. I was 2 and a half years from presentation to treatment, and it took me a while but I learned to roll with it.

Hang on in there. 

User
Posted 17 Apr 2023 at 14:32

Thank you ido4 for taking the time to give such a nice comment.  I hope things go well for you. Sending you solidarity and strength. 

Best wishes

Michael 

User
Posted 17 Apr 2023 at 14:37

Thank you so much Olefogey. Very kind of you giving such nice feedback. It was one of my biggest surprises, the always waiting on something.  Not sure why I was suprised by this! So pleased to see you last reported an undetectable PSA, long may it continue for you.  Sending positive vibes and strength to you. 

Best wishes

Michael 

User
Posted 18 Apr 2023 at 19:31

Hi Michael 

Well,what a posting,you've hit the nail on so many heads,sorry I haven't replied earlier,had a set back with kidney stones and had a nephrostomy tube fitted back in me also yet again had to cancel a trip to see my son in Stockholm 12months on from last time what an anniversary for us both,just when I think I'm treading water and staying a float a wave comes along and puts me under its taking time to tread water again,off treatment at mo due to kidneys getting answers of the hospital is like removing tonsils,sorry to have a rant on your thread micheal,I'm sure you'll be here next year to hear my rants again,

Take care bud regards Phil.

User
Posted 18 Apr 2023 at 22:08

Oh no Phil, so sorry to hear you had to cancel your trip again! What a set back for you but hopefully they can get your kidney stones sorted out and get you back on your treatment sharpish mate.  I guess it is an another thing we learn isn’t it, there is no such thing as a long Period of plain sailing, it always feels as though there is something to disrupt.  Take care mate and hope you recover soon.   Keep on ranting! No problem at all to me. 

Cheers

Michael 

User
Posted 19 Apr 2023 at 08:41

Dear Michael, 

Your post is honest and lovely and made me cry. As you know my husband has had advanced prostate cancer for a couple of years and now on abiraterone like you were but wirh mixed results. Dreading the next PSA as I know that next is the palliative chemo also.

I hope there's something  more for you and I wish you well. I feel such a fraud as its not me with cancer and now I feel the years he's had it till now we should have made more of.

Love Melissa x

Mrs MAS

User
Posted 19 Apr 2023 at 11:01

Thank you so much for taking the time to reply Melissa and i have everything crossed that your husbands PSA plays ball and the drugs keep working.  I am sure they will for now.  Sorry I hope I didn’t mean to upset you or anyone.  I am hopeful that things will turn around for me and that there is a treatment path ahead.  I like to stay confident this will be the case. We all have to have that wee bit of hope I think :) 

Look after you, you are far from a Fraud .  The impact on family and friends is so high and sometimes you are the ones who are forgotten in all of this. 

Take care 

Best wishes to you both 

Michael x x x x

User
Posted 19 Apr 2023 at 12:59
Hi Michael , I enjoyed reading your post is brilliant and spot on. As the wife of my Mike who as you know was diagnosed with advanced prostate cancer a year ago, I will make sure he reads it. Mike for some reason wont join any forums, he leaves that to me. However heis always interested in my feedback from the forum. He had his PSA test this week and will know the results in two weeks time when he meets with the Oncologist. So keeping all fingers crossed for a a good result. I am sending positive thoughts and vibes to you and all those on the forum.

Maud.

User
Posted 19 Apr 2023 at 13:12

Thankyou Michael, you didnt  upset me, I needed a cry. 

Good luck x

Mrs MAS

User
Posted 19 Apr 2023 at 14:59
Hey Michael, that was easily the best and most useful post I have read so far in the month and a half since my bombshell out of the blue, and the bombs keep on coming. I shall take several leaves from your book (you should actually write one) and try to enjoy every day and all the waiting! I am currently in a holding pattern to find out if my T3bN1M?? is going to get any worse (especially with PSA at 119), PET scan Friday 28th and then a little more waiting to get the results from the Oncology team. As you mentioned, already bored of people saying "oh that's not so bad, they can do amazing things these days!" but they do mean well and are trying to be positive, as am I!! HT already started on day of diagnosis confirmation (not to shabby - little white tablets to block Androgen getting to the cancer cells) and now am onto the injected implants Zoladex or something that sounds like that (not so bad really so far). Wishing you and all the others who have also commented on your terrific post all the best in your journey's, enjoy every day, hold your loved ones close, take every opportunity to tell them you love them and may you all have many enjoyable years ahead of you!! David x
User
Posted 19 Apr 2023 at 19:36

Hi Maud, I hope you and Mike are well. Of course I know he was diagnosed at the same time as me with very similar scores etc.  I hope Mike is still doing well and still having a good response to treatments.  I do hope his PSA stays low and his positive response is a message of hope for us all.  I hope you are still doing ok as well. I know you are the one who comes here and relays the information back so I hope you have plenty of support.  I am ok and still hopeful for a turn of luck soon.  It’s got to happen sometime I think so why not now. 

Take care Maud and best wishes to Mike 

Cheers 

Michael x 

User
Posted 19 Apr 2023 at 19:37

Hi Melissa it certainly helps us all from time to time to have a wee cry, I am not much of cryer and I have had a good few this year! 

Take care of yourself. 

Michael x 

User
Posted 19 Apr 2023 at 19:41

Hi Kerm63, thank you so much for the kind feedback and good luck on your progress through this disease.  I do hope your bone scan is clear when you get the results. I have my fingers crossed for that.  Your numbers are similar to mine but as you can see from my response to Maud there is no universal repsonse deadening on numbers.  Mike and I were very similar and he had a better response than me.  I am hoping this is the case for you David.  Sending positive vibes. I am glad you have started on a treatment pathway already and this will give you the best way forward I think.  

Again thank you for your response and good luck with things. If I can be of any help please feel free to drop me a message.  So sorry you are in this silly club! 

Best wishes

Michael 

User
Posted 20 Apr 2023 at 07:40
Wise words Michael, your honesty and pragmatism does you proud. All the very best wishes for your continued treatment path and I look forward to your year 2 update.

User
Posted 20 Apr 2023 at 08:24

Hi Jasper, thank you for taking the time to read and the lovely feedback.   Yes I am positive for a better year ahead this year. 

Hope you are well. 

Best wishes

Michael 

 

User
Posted 08 May 2023 at 16:21
Hi Michael

I'm late onto your post but I thought it was wonderfully well written and really very moving - thank you. I'm probably too late for this but I hope you have, or had, a fantastic time in the Outer Hebrides. It is one of my two favourite destinations in the world (the other being Ardnamurchan). I was lucky enough to have two weeks there on a sabbatical about 10 years ago - just me, my Morgan, golf clubs and walking boots - as respite from caring for my late wife Lit (who sadly died last year 8 weeks before I was diagnosed). As you say in one of your answers - the beaches are just amazing.

I am lucky in that Abiraterone seems to be working well for me but none the less much of your post resonated with me - especially what people say to you - trying to be kind but coming out with some classic howlers.

Wishing you well in your next steps with treatment.

Kind regards

Ian

PS I've been blogging about my experience on LinkedIn to raise the profile amongst my contacts.

User
Posted 26 Jan 2024 at 18:10

Hey Michael,

Just thought id drop in again in what I think, is easily one of the greatest posts to have been written on here in my 2 year journey with this thing.

I hope you are more than well my man.

Best,

Jamie.

User
Posted 26 Jan 2024 at 20:25

Hear hear to that!

User
Posted 26 Jan 2024 at 22:02

One of the bravest and most moving things I've ever read. 

User
Posted 27 Jan 2024 at 00:25

Hi Michael,

Your post whilst heartbreaking, is very inspiring indeed. You certainly brought tears to my eyes. Its so easy to gloss over the impact of this, but in your own way that hit so many levels of life.

My demon is not as advanced, but 7 months AS on from diagnosis, it does eat away psychologically. It feels like I am walking round with a volcano awaiting to erupt.

My first instinct is to shield and protect those around me from this, but when serious health concerns inevitably lead to re-assessment of life and longevity, your loved ones do notice those subtle signs of change. Sure LPAs and Wills are sharp edged necessities, but the little things like me writing a burgeoning novel (sort of secretly late at night) on how to maintain the house and take over all the duties we take for granted. My pathetic not so convincing efforts to introduce family members to what I might do or contacts I have. The changing of the guard almost in case the worst happens. 

Above all we must make the most of life in the best way possible, because it does go on. 

I truly wish you and your family the best for the years ahead. Take care, Mark.

User
Posted 27 Jan 2024 at 01:54
Sadly, I don't think Michael is with us anymore. He was on palliative care in June 2023 and hasn't logged in since July 2023.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 27 Jan 2024 at 06:25

Originally Posted by: Online Community Member
Sadly, I don't think Michael is with us anymore. 

I read his bio, which is equally heartbreaking, and thought that might be the case. 😞

User
Posted 27 Jan 2024 at 06:38

Hi All, Michael became a friend through this forum and we PM'd quite often. Sadly he lost his battle in July 2023, confirmed by his lovely wife. He had a huge positive impact on me and taught me how to get through this journey whilst smelling the roses along the way. An amazing guy, who I wish I had met in person. Rest in peace Michael, your legacy lives on through this post and i am sure in many other ways. David

Edited by member 27 Jan 2024 at 06:39  | Reason: Not specified

User
Posted 27 Jan 2024 at 08:06

Thank you David.

Im just a little bit heartbroken at that.

Rest in peace Michael. Bless your soul.

 

Jamie.

User
Posted 27 Jan 2024 at 10:03

Very sad to hear about Michael we roughly started our journey together and had a very similar diagnosis and we're both the same age,and I must admit we did pm for some time but did lose contact some months ago,I thought something wasn't right but still shocked to here.

RIP Michael 

User
Posted 27 Jan 2024 at 19:47

That's so very very sad.

Michael, your spirit most surely still reaches us. RIP.

User
Posted 28 Jan 2024 at 08:42

How very sad this has happened and also that we didn’t know about it until now.

RIP Michael.

Derek

User
Posted 17 Feb 2025 at 21:31

So yesterday morning, I , with my now 10 month old border collie called Moss. Walked the length of Luskentyre beach.

Its been on my to do list thanks to you Michael.

Done..

Jamie and Moss. x

Edited by member 17 Feb 2025 at 21:38  | Reason: Not specified

User
Posted 06 Jun 2025 at 13:05

Well done Jamie. I am sure Michael would have been happy to hear that you did it. In the unlikely event that Michael´s wife Moira (I think) is still getting the alerts for this message stream, would you please reach out to me. I would like to publish in some way Michael´s advice that he generously posted after his first year after diagnosis. I have used AI to turn that post into "Michael´s Tips and Rules for living with Prostate Cancer" and I have a feeling Prostate Cancer UK might like to turn it into a leaflet that could help many other men like Michael helped me. David

User
Posted 06 Jun 2025 at 13:08
Michael´s original post is above if you scroll lots and here is what Chat GPT did with it (it looks much better in Word, but you will get the idea!)

Michael’s Advice: Tips & Rules for Living with Prostate Cancer

________________________________________

1. Understand That Prostate Cancer Is Not One Disease

Prostate cancer is not homogenous. There are many types, stages, and treatment paths. Some men live long, full lives with a curable, slow-growing form. Others, like me, face a more aggressive version. If you have the latter, be prepared: people may not grasp the seriousness. This can be frustrating - especially with friends, family, work, or insurance providers. Seek support from your medical team to help navigate these conversations.

________________________________________

2. Learn the Art of Waiting—Without Pausing Life

Living with cancer means living in a constant cycle of waiting for test results, scans, and appointments. But while you're waiting, time is still passing. Don’t press pause on life. Find ways to live meaningfully in the in-between moments. Don’t let cancer steal more time than it already has.

________________________________________

3. Your Diagnosis Affects Others, Too

Even if you're surrounded by love and support, remember—your loved ones are also carrying a heavy emotional load. They don’t have your firsthand experience; they rely on your updates and your honesty. Try to be real with them, even if it means using humour to soften the blow. Lean on them, but also be mindful of their need for support.

________________________________________

4. Accept - But Don’t Surrender

At first, I resisted slowing down. I thought accepting fatigue or pain was giving in. But acceptance doesn’t mean defeat - it means conserving energy for the right moments. Rest when you need to. Save your strength to enjoy life. That’s not giving in. That’s fighting smart.

________________________________________

5. Focus on What Truly Matters

A cancer diagnosis changes your perspective overnight. Suddenly, all the things that used to consume your energy - work stress, minor annoyances - fall away. It becomes clear that very few things truly matter. Focus your time and energy on those.

________________________________________

6. Stop Doom-Scrolling

Googling your prognosis rarely leads anywhere good. Online statistics don’t know you, your strength, or your support system. It’s natural to search, but try to limit it. Talk to your doctors. Stay informed, but don’t let the internet steal your peace of mind.

________________________________________

7. Let Cancer Open Unexpected Doors

Yes, there can be positives. I’ve made friends I never would have met otherwise. I’ve had to leave work, which, surprisingly, created space for new experiences and meaningful moments. Cancer changes everything, but not all change is bad. Stay open to the good that might come from it.

________________________________________

8. Hold Onto Hope and Make Plans

Even with advanced cancer, I still make plans - weekends with friends, time with family, and trips to recharge. These plans give life meaning. Keep looking forward, even if the future is uncertain.

________________________________________

9. You’re Not Alone

Whether you're newly diagnosed or years into the journey, know this: you’re part of a community. Talk to people. Stay informed. Be kind to yourself. And don’t panic, you will find your way.

________________________________________

10. Everyone’s Path Is Different

These are my learnings. Yours may be different. And that’s okay. The path is deeply personal, but we learn from each other. Share your story when you’re ready, and listen, someone else may need to hear it.

________________________________________

Michael’s Final Words

“For those on a curative pathway, please stay cancer-free - I send all my positivity.

For those not, let’s hang on for as long as possible.

And for those just joining this club, don’t panic. Stay informed and keep talking to those closest to you. You will prevail.”

 
Forum Jump  
Email this conversation Print this conversation

Join the online community now.

Click through to become a member and gain access to support, information and real time replies.




MenuTop ▲
©2025 Prostate Cancer UK