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Bazza Update - The road of certain uncertainty

User
Posted 25 Apr 2017 at 21:35
Bazza , I am sorry that your head is where it is. I can not tell you what to think or how to behave as I am me and you are you however I can tell you how I now feel about stuff.

When I was first diagnosed every day was torture, you no doubt were there too. It took me a few months to start to understand a day worrying was a waste of a day of my life. Since then that thought process has got stronger and stronger as I have achieved or witnessed things I never thought I would when first diagnosed. I get my latest blood test results tomorrow, two years ago that would have meant I had not slept for two nights and felt sick with worry. Now it means I wonder if I shall have an Eccles cake or a 4 finger kit Kat whilst I am waiting, I can not change anything, life is good today and it will be tomorrow whatever the result. A day will come when life actually is not so good and I have no idea what I will be like on that day or thereafter but that is not today and won't be tomorrow so I refuse to let fear spoil those days.

As I said, I am me and you are you but I hope you can take some of my mental strength into the near future at least.

Rooting for you always.

Kev

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 26 Apr 2017 at 06:30

Great post Kev ,your thoughts are very similar to my OH ,he gets up every morning and looks forward to the day ahead ,as you say this may change but until then ...
Bazza I hope all works out well for you .
Best wishes
Debby

User
Posted 26 Apr 2017 at 06:54
Thank you Kev, sincerely.

With so many great men gone before who who be able to know where I'm at, it's good to know there are more forum legends in the making.

I really appreciate your post.

Barry

Bazza
User
Posted 26 Apr 2017 at 06:56
Originally Posted by: Online Community Member
Hi Bazza,

I'm sorry to hear you've suffered this setback but as others have said, it may be a flare created by the switch.

I really hope they can sort it for you.

I just wanted you to know that I'm routing for you and wish you luck for an early solution.

Your posts have inspired me, and many others I suspect, to change my attitude towards my illness and I feel calmer now than I did in the early days. I have a lot to thank you for and will always be grateful. I hope you find peace again in your thoughts.

Steve



Thank you always Steve.

Bazza
User
Posted 26 Apr 2017 at 13:42

Hi Bazza,

You know my stance has always been glass half full so you would expect me to tell you there are lots of options pre and post chemo. I haven't had chemo yet because it was not the protocol then and enzalutimide has been successfully put off for a year so far. I await new scan results in a couple of weeks which will dictate next steps but I am focused on today not tomorrow. There is also radium 223 in the wings which a couple of stalwarts are benefitting from at the moment. I have had prostap for over five years now and remains my core treatment. Yes the usual side effects and I have had my fair share of ancillary ailments including infections but I believe that core treatment has kept me stable.

Believe your normal optimism at this time it will serve you well whatever happens tomorrow.

User
Posted 27 Apr 2017 at 16:12

Bazza


 


For me, at the beginning of my journey, you and others sharing your stories are both inspiring and scary.  Scary in the sense that I get an idea of what might be ahead for me in a few years, but inspiring in that others (including you) have overcome so much.  Despite the challenges, it makes me realise that there is hope, even though some days this gets to us all.  So thank you for sharing your story - your posts have helped me and given me hope.  And best of luck as the medics and you decide on next steps.


 


Ulsterman

User
Posted 30 Apr 2017 at 22:20
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User
Posted 04 May 2017 at 17:12
Not in a good place people.

Starting to feel complete exhaustion with four monthly doses of ADT every six weeks. My shins ache, tits that any woman would be proud to own, I have neuritis in my right shoulder (non cancer related), my bones and body aches all over. I have no motivation, my acid reflux is returning and I have all the stress of CT and bone scans in a couple of weeks. A year ago, this cancer thing was a breeze but then it always is if you're asymptomatic. Now, I just feel like buying an EasyJet flight to Switzerland and be done with it.

Sorry

Bazza

Edited by member 04 May 2017 at 17:36  | Reason: Not specified

User
Posted 04 May 2017 at 17:27

Hi Baz

Have you spoken to your GP about Prednisilone to ease your aches and pains
Meanwhile I am concerned that you are feeling so down
You are one hell of a guy as you have been so honest about your fears and general feelings about this damned curse. So, Spartacus, up and at 'em my old son.
Please get this Switzwerland thing out of your head.
I lost my son to train suicide because I didn't recognise the symptoms of his depression and as sure as hell I won't let you go down that path if there is anything that I can do to prevent it.

Don't apologize , think of your family
We all love you on this site as you are part of our family

Ray

User
Posted 04 May 2017 at 17:49

Bazza
You are nearly folklore mate and we all look up to you big-time. Feel so bad for you and have always looked at you as my role model. I don't know what to say I'm afraid but we all love you. Try to keep fighting !
Chris


If life gives you lemons , then make lemonade
User
Posted 04 May 2017 at 17:50
Bazza

So sorry to read about how you're feeling.

Ulsterman
User
Posted 04 May 2017 at 19:42

Bazza you sound really down and i don't have the words to lift you.

I have always admired your attitude to your cancer but I can see that there comes a time when it all feels too much.

Please don't try to shoulder this burden alone but ask your GP for help. I assume that on a very basic level regarding the acid reflux for instance, that you have been given Omeprazole or one of those drugs (can you take things like that if you are on treatment?)

If it helps with the reflux then at least that's one less thing to fret you.

You know you have the support of all of us >

Please don't give in (although I appreciate it's easy for me to say that isn't it - I'm not the one suffering)

We can't control the winds - but we can adjust our sails
User
Posted 17 May 2017 at 10:09
My uncle has a poor choice in motor vehicles. Against my advice, her recently bought a 16 year old junk heap which subsequently cost, in addition to the £1200 he overpaid, a further £1000. For £2,200, I advised him, he could have laid down a deposit on a brand new vehicle and take out a PCP deal over three years paying around £120 a month for a decent vehicle covered by warranty and that would start first time.

I digress. Yesterday, I felt like the junk heap he had purchased. Pricked more times than a monkey falling into a cactus plant, I had my follow up CT and bone scan. The last time I had scans was a year ago. Back then, three lymph nodes were involved and the bone scan was clear albeit it was showing darker areas where my bones and joints are succumbing to the ravages of being on ADT for two and a half years and middle age. My PSA also just rocketed to 13 having gradually crept up from 1.6 over the past year.

During the bone scan, the screen to the left of me showed two black screens and as the plate passed over my body, I could make out hundreds of twinkling lights. I really hope this wasn't indications that I am lighting up like a Christmas tree. Also, they had to re-scan my hip which wasn't exactly reassuring.

Tomorrow, I return for the results. I dread this appointment like a convicted killer might dread sentencing and am sitting here alone in my lounge imagining all kinds of scenarios: multiple lymph node involvement, attachment to major organs, multiple bone metastases. I am scared, my heart is aching with fear, my mind buzzing with 'how long left?'

I was under the impression that bone mets indicate the final stage and that the median time from discovery of these to death is 18 months. I am just so scared of a future I now have no control over and that primary and secondary treatment have failed to address the inexorable rise in PSA. I feel that I am being conventionally treated with no left field thinking. Maybe that is unfair on my consultant but know the reality is chemo then death - or does it have to be this way?

Physically, I feel great and normal, asymptomatic and without any pain. My only issues are the psychological damage this disease is causing, grade three gynocomastia and extreme fatigue - but I can live with those. What I cannot live with is further progressively bad news and no hope. I fear tomorrow as if it were my execution day. Maybe it will be.

Bazza

Edited by member 17 May 2017 at 12:51  | Reason: Not specified

User
Posted 17 May 2017 at 12:27

Hi Baz
I really do feel for you old chum. I can't allay your fears as this is all a very personal thing,
but:
Bone mets are an indication that the cancer is spreading and not an indication of final stage, so
try to put that theory to rest. I refer you to members' records and to some of those on this site and how they were diagnosed when they already had mets and how many years they managed to survive .
One in mind already is dear Old Al, just look at his record and see how he fared .
He was diagnosed with extensive mets and had a PSA over 1000 and lived for 9 years from his diagnosis drinking a bottle of red wine a day. Where did you get the 18 months median time to death from? That is probably old information. I think they can generally do a bit better today.
Nobody knows when any of us is going to die, so live in hope of a few more years on this planet.

User
Posted 17 May 2017 at 13:06

Hi Bazza, I am so sorry that things are where they are. Waiting to go and get results is like being trapped in a situation over which you have little or no control. What this awful disease does to us physically and mentally is dreadful.


All I can say is that post salvage radiotherapy my mind goes off creating all sorts of scenarios, none of them good or helpful.


I am attending a "Living With Cancer" course at Maggie's which is attempting to get me to live in the moment and accept the position I am in rather than the constant maelstrom I often find myself in. Easier said than done....


Initially this is stirring up all sorts of emotions but I am hoping that in the longer term it will help me deal with my situation without getting angry/upset/depressed, I could go on. I wonder if I had the right surgeon, did he dig deep enough during my RP, what if somehow I was diagnosed earlier, did the biopsy spread my cancer...........?


It's a very difficult thing to do but unfortunately we cannot fully control what happens next and in my clearer moments I realise that I can only live life as best as I can now. This helps me to continue and enjoy things. Like you I feel OK just now other than fatigue, some post radiotherapy bowel problems and hot flushes! At other times I can go to very dark places and scenarios. I don't think I will be alone in this.


Like you I dread going in to my Cancer Centre to speak to my oncologist as all I seem to hear is more bad news but ultimately these guys are trying to cure us or give us longer on this Earth whilst balancing out quality of life issues against treatment possibilities.


I will be thinking about you tomorrow as will many others on this forum. We are all linked by this awful disease but at least we can communicate, support and be there for each other.


Yours,  Ian.


 

Ido4

User
Posted 17 May 2017 at 13:09

Bazza

Unless I am mistaken you have not even started Chemo yet?

You have got years in you still.

All the very best regards to you

Dave

"Incurable cancer does not mean it is untreatable and does not mean it is terminal either"
User
Posted 17 May 2017 at 14:10

Dear Bazza,

I can't begin to put us in your situation so can only imagine what it must be like but I do feel for you and your wife and hope that tomorrow's news isn't as dire as you are anticipating.

Best wishes and fingers crossed for you

We can't control the winds - but we can adjust our sails
User
Posted 17 May 2017 at 14:57

Bazza,

I can't change your thoughts but I can say that some of your conclusions on what might be happening is off. Firstly many on here have bony mets and I have forvthe past 5+ years. Survival is good amongst this group with good responses to hormone therapy. I haven't had chemo yet and this can extend life plus there are other options. But you may not have any bone mets so wait for the results. Don't focus on the what might be"s just the here and now.

If you have had a ct scan too watch out for any soft tissue spread in the major organs. If there is none then this is very good news indeed.

Keep the faith you have time on your hands. Wait for the results, listen to your onco and come back in here with good news.

We are all rooting for you.

User
Posted 17 May 2017 at 19:31
Sage advice and sound female logic required Lyn for tomorrow

Baz x
User
Posted 17 May 2017 at 20:01

My memory is much better than yours, I remember all the times you have thought you were not strong enough to bear whatever news or results you feared. In fact, even when your worst fears were realised, you bore it and survived. Newer members would not know of the demons you have nailed and continue to face and so can be forgiven for underestimating your distress but lovey, there are others here who know that dark place as intimately as you do. I can remember that you thought you would give up and die at the mere suggestion of recurrence or salvage treatment, and again at the prospect of being incurable but here you still are, living and loving and surviving and creating memories with the people who love you.

Your cancer has never followed the rules and I think the biggest mystery is why you never ever reach castrate level - if the onco can get to the bottom of that then happy days. The big jump this month could simply be due to the change from one hormone to another. If the onco suggests chemo, give it serious consideration - some cancers that do not respond well to HT are particularly susceptible to chemo and as has been said above, even if you do develop bone mets chemo and some of the newer treatments can knock the mets right back. Ask them what their theory is about you never achieving castration.

There was a post from someone here a while back - they had peeked at their scans and frightened themselves but it turned out that the bright bits were okay and it was the dark bits to worry about or something like that. Don't go all amateur medic ... it is never a good plan!

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