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A rise on this test

User
Posted 08 Feb 2019 at 11:23

That’s just it Pete and Bri. you just get on with it because you have no choice. what will be will be and you learn to accept new normals whether they are positive or negative. I truly believe that dealing with these stepping stones is the making of one as a  man. It certainly taught me a lot. That doesnt mean its any easier this far down the line which I obviously am as you can read my previous posts to see just how scared one can get - but in the end, your mind reconciles with the facts and you just deal with it. I wrote a piece once called A place called Acceptance though cannot for the life of me find it, or was it The road of certain uncertainty. anyway, you get my drift. i wish you negative test results and positive outcomes brothers.

Bazza

User
Posted 08 Feb 2019 at 11:36

Brian - clouds.

The dark ones are many and random, some anticipated and others when you least expect them like when you see a fit couple of your own age group enjoying life or doing something as mundane as the supermarket shop. You get the clouds descend every time a cancer advert comes on telly and when you see a collector for MacMillan out on the streets. Constant reminders of a life once free of illness and your current status cause more clouds to descend and it all becomes too much.

So how do you deal with it? You deal with it like this......

You pause. You take stock of your life. You remain thankful for all those good years you’ve had and you switch your thoughts to terminally ill children in hospital whose only ambition is to make it to a sixth or eighth birthday. To the young men and women in their 20s or 30s cut down by serious illness which means they will never reach the joys of the years you have nor see children grow or the years pass. You count your blessings and remain thankful. You do not concentrate on the old men in rude health in their 70s and 80s and do not bear grudge nor become jealous because that is deeply negative and only brings more clouds.

Above all, you realise and keep telling yourself that you are nobody special, no matter how much you might love yourself - and that every one of us will follow the same exit but at different stages. We will all pass. What we must do at whatever age we are is wring every last drop of joy from our lives no matter how dark and pessimistic the future seems - no matter how bad those consultsnt appointments go. Sometimes, the fear will overwhelm you - it often does me - then you take your mind as per previous and thank your lucky stars that you’ve made it this far in a world where a lack of opportunities for millions means an early death or starvation, or oppression, or war.

Cancer or not. We are the fortunate few. We know our fate. We don’t want it but we have the power to plan our futures however uncertain. Millions don’t and never fulfil their potential because they take life for granted. We never will. The reason is because WE ARE GIANTS.

Bazza

User
Posted 08 Feb 2019 at 12:02

Bazza thank you for your wise and encouraging words. I remember reading the post you are referring to

Hope the chemo is going as well as it can be for you

This weekend I will park it all as we spend a weekend in Twickenham drinking ale and supporting the boys in Le Crunch 🏉🏉

User
Posted 08 Feb 2019 at 12:53

It is so good to have your wise words back on this community Bazza. 

Bri, I know when I was told of my recurrence I nearly passed out as fear gripped me. My oncologist has told me very clearly that my recurrence is aggressive and likely to cut my life short, he won't commit to numbers other than to say you could have years not months but no-one can tell.

It was certainly far worse hearing about the recurrence than my initial diagnosis. I had been through the radical prostatectomy and all that entails but the b***ard never really left.

The oncologists are dealing with this on a daily basis but I also do wish they would try to imagine what it must feel like for us. (I'm not saying they are completely without empathy but some of the specialist nurses I have met are)

One CNS told me I was panicking (I wasn't) and that there was plenty of time to deal with things (there wasn't).

My GP was even worse until I put him right, information wise.

Thank goodness for the specialist nurses here on PCUK and for our fellow travellers and their nuggets of wisdom.

Wishing you all the best,

Ian.

 

Ido4

User
Posted 08 Feb 2019 at 13:23
This latest result for me has been awfully hard. I’ve not slept since tbh. I awake in the morning heart pounding with a dread like a fight is gonna break out somewhere. At last spread is likely found. I knew it would be. Four months hopefully of normal life then almost certain treatment start. I was told on average for G9 and my stats that I’d get 4 yrs. So I may be dead at 56 leaving a 12 yr old son. A sickening feeling in my chest that hasn’t settled yet :/((
User
Posted 08 Feb 2019 at 15:28

Your post is very sobering Chris.

Thinking of you. 

 

Ido4

User
Posted 08 Feb 2019 at 16:10

Originally Posted by: Online Community Member

Bri

Not great news. I am in a similar situation and can't say the idea of HT is appealing, hopefully we both might not have further rises. 

Thanks Chris and Dawn

Probably be useful to keep each other updated regarding responses and possible treatments Chris

Bri 

User
Posted 08 Feb 2019 at 16:13
A very sobering thought indeed. But as we know Chris we have many men on here alone who have far outlived the ‘specialist’ prognosis/predictions

Stay strong mate

Bri

User
Posted 08 Feb 2019 at 17:05

Originally Posted by: Online Community Member

Your post is very sobering Chris.

Far from sobering, I think Chris should use those lemons to make a few gin & tonics!

I know this is in the vein of my usual ’concentration camp humour’, and I hope it will be taken in good part.

Best of luck to all of us.

Cheers, John.

User
Posted 10 Feb 2019 at 10:37
I’m not sure being on this site is a good thing or a bad thing. You can obviously get the great support which I appreciate. But as well as reading some very encouraging posts of years of survival following a bleak dx, you also sadly read some posts that hit home of how deadly this disease is and of men suffering and dying in a relatively short time.

So I feel buoyed at some point having read some encouraging posts but them brought back down to earth when reading someone’s terrible news. I guess the forum is a mixed blessing 😢

User
Posted 10 Feb 2019 at 12:14
I don't think there is anything wrong with having s good understanding of your illness and what it is and is not capable of. The biggest problem with forums is they attract only a small percentage of patients so they probably represent a very screwed view of reality.
User
Posted 10 Feb 2019 at 14:24

Stay strong Bri ,
Mine came back about eighteen months ago , but not sure if it ever left,
I had early Chemo six sessions , as I have now got three Mets
But three monthly Prostap keeps things under control ,I made it to Seventy which was always my target ,
it will be Eight years tomorrow for my Prostate Cancer , yesterday was 20 years since my Heart Attack
worst time is three monthly with Onco , but my Psa remains 0.04

Best Wishs

Barry

Edited by member 10 Feb 2019 at 14:25  | Reason: Not specified

User
Posted 10 Feb 2019 at 16:57
Brian

Francij is correct. That plus the fact that only 3 - 13% pf men depending on what you read die of rather tham with gives us a big edge over other illnesses.

User
Posted 10 Feb 2019 at 17:44
Bri,

I know that some of the posts are awful and really show the very bleak side of cancer but please take heart in that when you search for posters with symptoms like N's, there are very few. What there are on this site are hundreds of men who do indeed "outlive" the statistics, who live long enough for the next treatment be approved and who function almost normally with similar numbers to N. N is an anomaly, he doesn't fit the boxes.

Morbid fascination is something I'm sure most posters have experienced, when things are looking bad it's sometimes hard to not look for how much worse it can get, I know I did. Then knowing how awful it is/can be, I felt more appreciation for the very little things that were good. I still get waves of resentment and anger and "it's just not b****y fair" moments and I have to talk myself down to be in the here and now with N and the kids.

I'm not always sure how my posts are taken but I mean this to be supportive in every way. Only a very tiny percentage are as awful as N's.

Sending you hugs and best wishes.

Kentish

User
Posted 11 Feb 2019 at 06:56

Bri, Can I echo Kentish's sentiments please?  You'll see from my discussions on her posts that we are towards the end of this road too and that it has been a struggle.  But please don't be disheartened by what we say.  One of H's consultants once said 'What you don't want to hear Mr ...  is that you are a very interesting case.  And I'm sorry to tell you that you are an interesting case'.  We are rare and having the support on the forum makes a big difference to me, as it means we can see that we aren't on our own.  But remember in what we are posting that it isn't like this for most people.  And in the nine years that we have been dealing with this we have seen grandchildren grow up, even enjoyed some travel in the early days, spent a lot more time in each others company, and I have certainly learnt a lot.

Wishing you all the best.

User
Posted 11 Feb 2019 at 09:01
Thank you both and please please don’t think I was talking about your threads and the information you share. That is what the forum is for and having been around here for the last six years I am fully aware of that. We are here to support each other and this forum is a god send.

I think sometimes depending on your frame of mind it’s possibly better to decide what to read. I appreciate both of you (Kentish and Teacups) for replying when you have so much to deal with at the moment. Sending you both virtual (((((((hugs)))))))

Bri xx

User
Posted 12 Feb 2019 at 09:09

Morning Bri, I too have mixed feelings when looking through this site, I vary between thankful for being armed with excellent empowering advice and information, to despondency when it makes me aware of where this sodding disease might take me. On the subject of empathy from medical staff, I have found over the years that doctors often come across as sounding quite flippant, sometimes from pressure of work, but also from a lack of sensitivity, even humanity at times. To be honest there are times when I look at my grandchildren and have to stop myself from breaking down in tears as I fear I may not see them in in their teens/ adulthood. Stay stong mate. Anyway listen..we made it through Addick Comp in the bleak early 70s did'nt we...if we can do that we can get through owt !! All the very best Bri.

Paul.

 

 

 

User
Posted 12 Feb 2019 at 16:32

Haha that is so true Paul what with Atherxxxx and Burkxxxxxx running us ragged

Hope you are well mate

Bri 

User
Posted 12 Feb 2019 at 16:51
Do I need to go and visit this Addick comp which is probably now an academy but may still employ Burk and Ather?????
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 12 Feb 2019 at 21:32
Ha ha it is indeed now an academy. Burkxxxxxx (deputy head and ex RAF) has sadly passed away. Mr Atherxxxx (Headmaster) is now, so I have been informed, a wine connoisseur.

Early 70’s were different times. Enough said on that I guess

Bri

 
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