Advanced prostat cancer part 2

User

Posted 03 Jun 2016 at 14:10

by the way you are page not found again... that is a bit like computer says NO, very fixable but really annoying

maybe this will put you onto page 3 (oops Freudian slip) 13

User

Posted 14 Jun 2016 at 00:57

Although I am not suspicious the last few days leading up to our Wiz visit and the thought that I would be posting on page 13 and our appointment on the 13th has given me the Eebiee Jeebiees ( for those living in the North of England that is scared witless ( no I said Witless 😀 , ok I was tempted I cannot lie to say the Word bugger it I am going to say it ( Lyn get your tea away from your laptop ) shitless , oh dear that's me moderated.

So scores on the doors PSA up from 1336 to 1552

Alp slightly up from 218 to 220

Bone scan revealed new hot spots on ribs and down the right leg so ok not the best of news but certainly not the worst and with all those 13s flying around I think we got of pretty lightly.

I know that for some of you that would be devastating news but we knew the bone scan would be worse and in the words of the Wiz she is not overly concerned (how crazy is that statement ) who would have thought that 3 years ago I could even think that let alone type it.

How life changes .

So again in the words of the Wiz for now we are staying with Abbi and will squeeze every last drop from it and her words kind of echoed my thoughts . The results of the MRI were not available but she said she had a brief look and everything looked ok but she will take it to the MDT on Thursday and ring with results.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 14 Jun 2016 at 03:01

Hi Julie,

I'm really sorry to read Trevor's figures are up again.

I know what you mean about the 13th. I spent the morning at hospital while my wife was having a triple MRI Scan on her spine as they are very concerned she may have real problems. I'm really worried about what the scans will show and being carried out on the 13th. hasn't helped.

I just wanted to say that the two of you are always in my thoughts and wanted to thank you for all the kindness towards me and others on this site when they are are going through difficult times.

Steve x

User

Posted 14 Jun 2016 at 05:23

blooming heck you two (Julie n Nikon steve) you keep getting hit with stuff
really want to type something immense and supportive, but am lost for words

regards
nidge

run long and prosper

'pooh how do you spell love'

'piglet you dont spell love -you just feel it'

User

Posted 14 Jun 2016 at 10:35

Thanks for the update Julie.

I don't know where you both get the strength from. On second thoughts yes I do. From the love and support you give each other but also from the fact that you have a great little family there that need you to be strong, as they are for you. You've taught your boys well.

Steve, what can I say. Fingers crossed that your wife's problem can be found and sorted. Stress plays an enormous part in our health and let's face it, like Julie and Trevor, you've both had your fair share of stress.

Thinking of you all

Sandra

We can't control the winds - but we can adjust our sails

User

Posted 14 Jun 2016 at 12:47

Hi Julie,

I'm really sorry if it seems I may have infringed on your thread with comments about my wife but it was not my intention to do so. I just wanted to say how worried I am about my wife's health issues. I'm not allowed to post anything about my wife on my own thread but it's difficult not to say anything at all. I hope you'll forgive me on this occasion.

Steve

User

Posted 14 Jun 2016 at 16:43

Hi Julie and Trevor how you remain so positive I really do not know. You are a total inspiration to everyone. I wish I had half your strength . I wish you both all the luck in the world . Keep battling!

We have more appointments this week Steve now has breast cancer ( they think non aggressive, hopefully) in his left breast so this has held treatment up as in chemo only on HT at the moment. Will find out more this week.

Debbie x

User

Posted 14 Jun 2016 at 19:09

I see the black eye isn't getting any better ! I never know what to say when you update , other than my thoughts are with you , I love your humour and I just hope the very best for you both.
Chris xx

User

Posted 14 Jun 2016 at 21:49

You no Guys it's ok Chris in particular to not no what to say , I wouldn't no what to say to me either but I do have a sneaky feeling that we have a similar sense of humour.😆

Debbie thank you for posting it is still such early days for you and I can remember those oh so raw feelings and complete panic moments.

Steve no worries about mentioning your wife it is ok my friend.

Where do I get the strength from ? Time , Time is the only way after 3 years on this journey you somehow manage to get everything into perspective it hasn't always been like that in the beginning I was a quivering nervous wreck afraid of everything . It is impossible to live your life like that and yes I sometimes think that it is easier to accept from the beginning that as in our case to hear the words Terminal you don't expect much and every day is a bonus and wow we have had over (just got to nip of and add that up)1095 days . That's an awfull lot of days to waste, I have said this before Cancer isn't a death sentence it is a LIVE sentence and yes my humour has helped me and I hope lots of other people, it isn't a coping mechanism it realy is me , not quite sure where I get it from . I think I was born with it , for me laughter is the essence of life it doesn't matter how serious the subject there is always a funny side and almost always it makes everyone feel better. The three Ls are my mantra Live ,Love and Laugh.

So what better way to end this post LIVE, LOVE and don't forget to LAUGH.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 14 Jun 2016 at 22:09

I'm with you on that Julie. If you can't laugh you might as well crawl into a corner and give up.

Carry on laughing!

Rosy x

User

Posted 14 Jun 2016 at 22:12

Julie my SS

given all that you know I think I would have taken those results and said that they were better than expected. Main thing is that T is feeling OK, mobile and retaining his love for Tumeric and food.

Having a sense of hunour and an ability to laugh at yourself is a gift that helps you to cope. Mick had it in bucket loads and I am certain it is what kept him going no matter what.

I do think that Tulip is a poser, she just looks like butter would not melt in her mouth!

Catch up soon

xxx

User

Posted 14 Jun 2016 at 23:22

Erm - the three Ls, a menagerie, a ride-on, a strap-on and some turmeric

Thinking of you, Julie xxx

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

User

Posted 15 Jun 2016 at 11:54

I get what you are saying totally Julie. If the end game is going to happen one day your approach to the intervening period, which we all hope will be lengthy and reasonably manageable, is to make the most of it. Every visit is a potential worsening but there are many times when the results are a relief, always could be better of course, but they are ok. It feels as this time they are ok, and on that basis you can smile, continue on and hope for a steady state for as long as possible.

I understand this mentality and I think all of us with advanced cancer do as its always provisional. It's realistic but let's focus on the days, weeks, months and years ahead to make the most of these times. I know you and Trevor will do that and make the most of it. So always thinking of you as you move on to the next highs and if they have to, lows the future will bring,

User

Posted 15 Jun 2016 at 14:17

Julie. My best wishes also. The replies to your post are wonderfully supportive and what a comforting place this is .

User

Posted 15 Jun 2016 at 21:30

Hi Julie

Sending all my love to a wonderful lady and her equally wonderful husband.

Lesley xx

User

Posted 03 Jul 2016 at 17:55

Hello Julie,

I'm a relatively new member here.

With the terrible cancer problems that Trevor is going through, I'm absolutely astounded at your remarkable attitude in the face of very sad news. I've only read pages 12 and 13 of these postings - your sense of humour is amazing, well done you!

I was only diagnosed 12 months ago, but my local hospital, through their incompetence, kept me waiting 6 months for my diagnosis, which wasn't funny, but as far as I can tell, my cancer was local to my prostate, if that makes sense. Please forgive me for jumping into this post like this, I'm still trying to get the hang of this forum.

I also have a sense of humour, which may show up in time. Well, I'm the one who tries to cheer up my wife, regarding my cancer. She is devastated of course, but I try not to dwell on it, even though I cannot ignore the side effects.

Frank.

User

Posted 04 Jul 2016 at 19:50

Hi Frank,

No worries about jumping on my post pages 12 and 13 are just the tip of the iceberg the rest is a bit like War and Peace hard going in places but oh so worth the read.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 05 Jul 2016 at 12:21

Hello Julie,

thank you for your kind words. How is Trevor doing at the moment? I wish him well.

I go to visit my cancer support lady Barbara, at Fishguard this afternoon. Hopefully I'll see more members present, as for past 2 months, I've been almost on my own,talking with Barbara, which is fine, but I like to meet a gentleman called Arthur who has PCa, and has given me lots of encouragement, before I went for my RT treatment.

As for today, I've been to village shop for a paper - I walked - although it's a sunny day, I find the wind perishing cold! And I've still got the winter to look forward to - help me Lord!

Frank.

User

Posted 23 Jul 2016 at 00:00

Hi Guys,

I haven't updated for ages life has been hectic with the arrival of new puppies the wonders of new life always gives me a boost. Unusual for me but I will make this short and to the point.

PSA up from 1552 to 1712

Alp - 219

So steady progression on the PSA (no surprises there) it was as we had expected the positive was not quite as big a rise as last time, alp about the same . No change in treatment staying on Abbi for the next 4 weeks at least.

I do think that Trevor seems a bit slower in his movement but it is very easy to put that down to the cancer when it could just be the heat with a liberal helping of old age thrown in, come to think of it I am not so sprightly myself these days.

No real increase in pain which is what the Wiz is waiting for as soon as that happens she will switch to Raduim 223.

Just had a thought how easy these things roll of my tongue after 3 years of living with this disease how remarkable we are at adapting to situations .

So many at the moment going through tough times the song that springs to mind tonight has to be Simon and Garfunkal !Bridge over Troubled Water!

I'll leave with you that thought

Much love to all

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 23 Jul 2016 at 00:53

I'd been wondering how you were! Although the PSA is still rising at least it's not as fast as a few months ago so maybe the abi is keeping things at bay? And it's good that the Wiz still has something else up her sleeve. Aren't we all a lot slower in this heat? I know I've been sitting in the kitchen with a fan pointing at me for the last week (with another fan in the bedroom). No long walks for me until it's a bit cooler.

How many puppies have you got? Hopefully they will keep you busy as I'm sure you haven't anything else to do!!! Am sitting here now with Bridge over troubled water running through my head...

Take care x

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