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 |
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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
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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
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 |
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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
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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
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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
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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 |
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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
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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
Mo
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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
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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,
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Julie. My best wishes also. The replies to your post are wonderfully supportive and what a comforting place this is .
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Hi Julie
Sending all my love to a wonderful lady and her equally wonderful husband.
Lesley xx
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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.
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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
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.
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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 |
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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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Love that song.
Many of us keep that hopeful vision that there is something (somebody) we can trust to support and carry us.
You must be Trevor's bridge I think.
****
We can't control the winds - but we can adjust our sails |
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Julie,
I often think of you and Trevor and what you are going through. Having this disease is not an easy path and as you say it's remarkable how we each adapt to situations - " our new normal".
John
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Hi Julie, good song title for the situation that you are I and tolerating so well between you. john(surr33) and I often use song titles in our PM's to each other when describing situations or discussing treatments for others as well as ourselves, it brings interesting slants on it all.
Keep staying positive, you really are both good roll models, will be reading your future updates to see if you now use more song titles.
Best wishes to you both
Chris/Woody
Life seems different upside down, take another viewpoint
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Chris,
I thought we were keeping our on line bromance a secret!
J ( sorry Julie for gate crashing here ....)
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See, this is what I'm always harping on about. It is important to communicate with your other half or things will be misunderstood !!
http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif
We can't control the winds - but we can adjust our sails |
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Back by popular demand is my old avatar . This is years old and not how I look these days , trust me .
NEVER LAUGH AT A LIVE DRAGON |
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Ah, the siren we all know and love.
In a weird way your report of the latest results is good news - another okay 4 weeks of summer for you. I think you need the dogs to stop s*****g though to give you a rest :-(
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Finally, I find a positive argument for the pm facility - glad to be spared tbh
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Just keep keeping on, four weeks by four weeks, time creeps along Julie. Suddenly you realise that another 6 months has gone by. Trevor is such an enigma with the PCA, it's so wonderful to see that he is so resilient. We know all good things come to an end, but not yet Julie, not yet.
Love seeing the photos of the pups on Facebook, so adorable and yes, new life does do something to you doesn't it?
Hope the boys will help you both out in the holidays and that you spend some quality time together with those little four footed lovables.
With all the love in the world
Devonmaid (iPad wants to call me Deco maid just to add to the name confusion) xxxx
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Hi Raymond,
I have also just started on this journey, I was diagnosed on the 21st July, 15 cores taken at biopsi, 6 were positive, 5 3+3=6 1 3+4=7 PSA 3.7, doc said not to panic but it is hard, I started a new thread on this site under just dianosed and had some nice replys from people, it helps, I am still a bit numb but like everybody on this site seems to say try and keep positive negative thoughts are a definite No No,
best wishes to all
Paul
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Yes Yes Yes Julie !
It may have been a while ago but dear lord you had it girl.
Far better than that picture of you with the black eye 😀😀
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SS
so sorry I ave been AWOL but this weird thing called DIY has taken over my life. Before I get a rude comment from Lyn or others I genuinely mean that odd activity that I thought only occurred post 60 and once the flat cap and whippet had been adopted! I have even mastered a man tool (electric drill)
Seriously though the rise in PSA is still relatively slow and if Trevor is well and feeling OK then that is good. Enjoy the summer and all Lilly and Dora's puppies ( the latter brood must be due any day now)
Hopefully the boys will help Trevor with his own DIY projects so you get more things finished at the bungalow. The terrace looks fabulous so now you have your lovely conservatory and your own outdoor space too. Who would have thought you would have any of this 2 years or so ago.
will catch up in a phone call this week
xxxx
Mo
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Hi Julie
Lovely to see your update despite You having to report a psa rise. I often think of you and others and wait very patiently to hear how things are.
Hoping you have a lovely August.
Take care
Lesley xx
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Funny how things can turn on a sixpence (now that's showing my age) so latest developments are increased back pain no surprises there you are all thinking with PSA nudging the 2000 that is pretty much par for the course. Trevor is putting it down to a pulled muscle of course he could be right , me I don't think so.
New developments are more worrying though he has blood in his poo since last Fri dark red he has also had stomach cramps for a few weeks to be honest they have been for quite a few months but we put it down to all of the medication.
So visit to GP last night and the good old rectal exam reared its ugly head again needles to say Trevor was not a happy bunny, nothing untoward was found IE no piles etc I pretty much guessed that due to the colour of the blood. Upshot is bloods done today and promise of being fast tracked for investigations.
Then this morning half way through breakfast he was sick , Trevor is never sick he has a cast iron stomach he has only managed soup for the rest of the day but that could be worry.
I have done my Mantra, Julie Do Not Google I said it to myself oh at least 100 times , we say it to all newbies don't we ,Don't Google so of course I Googled . If I get replies to this post be honest and tell me if you have Googled . I know you all have 🤓
We always think once the initial waiting for results is over that we won't have to go through that agonising wait again but honestly this whole journey is just a waiting game.
Now that's a que for a song . Love is just a waiting game Amy Whinhouse.
BFN
Julie X
Edited by member 29 Jul 2016 at 03:22
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NEVER LAUGH AT A LIVE DRAGON |
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Julie,
Of course I've googled, many times in fact but I held off doing so until after my biopsy. My wife hates me looking things up and then will ask me a question about PCa and expect me to have the answer! And as you say this whole journey is a waiting game. Slow and uncertain.
I hope Trevor starts to feel better after yesterday and hopefully it was only the worry that caused him to be as he was. I know all about the blood issue too and have been referred for this.
Keep going and look after yourself , as ever thanks for your posts.
John
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I too am a Googler! In fact I am my extended family's Googler, well the older generation anyway.
Did I Google PC at the start. You betcha. Currently googling skin cancer since John has just been treated for Basal Cell and has had a biopsy on his arm.
I think we tend to warn those new members off who come across as panicky since Google can have too much information when you begin this journey and if you don't know what to check you check everything.
Hope Trevor is feeling better today
********
We can't control the winds - but we can adjust our sails |
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Hi Julie,
My fingers are crossed and everything else that Trevor is feeling better soon.
Steve
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Of course we Google Julie, but I don't do it much these days as I don't trust much of the information coming out. In reality most of what's out there never quite covers what you need to know and you end up getting confused.
Worrying times with Trevor, glad the GP is on it. Have you told your specialist nurse or consultant? Trevor is a tough man, but I know how concerned you will be. I think you may need the comfort blanket back to keep you going trhough the weekend.
Massive hugs
Devonmaid xxxxxx
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Entering the unknown again is always difficult. I have no easy answers. I have just had two severe bacterial infections which did have stomach cramps as a symptom so assume they will check out infections. Nasty and sudden but lasts ten days at most and not linked. The pains may obviously be linked to the bone mets. Do you have a copy of Trevor's last bone scan? When I get new pain I check my last scan to see if it corresponds with where the pain is. If it is I worry, if not I breathe a sigh of relief.
Hope these things work themselves out, Julie. If the GP comes up with a 'normal' solution, you can google that but beware looking around for symptoms. I used to have a symptoms book and in 1982 I had a swollen testicle so looked it up and it told me testicualr cancer. I laughed! Me, 29, cancer. A week later I was diagnosed with testicular cancer. Stay positive.
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Hi Julie
There's always something to worry about, wouldn't it be lovely not to worry about our partners.
Maybe this episode is not related to the cancer but to side effects of medications,(not sure what medications Trevor is on?), that could be reversable with treatment. Has gp prescribed an antacid ie ranitadine/omeprazole/lanzoprazle, anyone of these will aid healing. Perhaps he needs an anti sickness pill prescribing also.
Hoping Trevor feels better soon.
Lesley xx
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Yes Lesley he has been on Lanzoprazle for about 10 years with his heart meds also daily aspirin which can cause ulcers so this could be the cause of the bleeding and the sensible part of me thinks that would make sense.. The other part of me that slightly resembles a chicken with its head cut of googling like a lunatic and only focusing on worst case scenarios sometimes wins the day.
From day one we have lived with no hope , then day one turns into day two, then three months , then six months and here we are three years on all with so many dramas . Yes Lesley I so envy people that live normal lives with what shall we have for dinner type thoughts .
I suppose that is what keeps us all connected on here only those that have lived it or are living it will ever understand our normal is so far from normal.
Lovely to hear from you Paul I hope the tummy upsets have sorted themselves . T has had a lot of cramping , burping and hicups in our situations it is so easy to add 2+2 and end up with the help of DR Google at 102 . I don't have a copy of his latest scan results but to be honest the image is imprinted on my brain there wasn't really any areas that were not affected and how he manages to stand upright is beyond me.
DM THANKYOU so much for the offer of the comfort blanket but I think there are others on the forum that need it at the moment far more than me. I would only get it covered in dog hair. 😊
I was realy struck by Bazzas post on the town called acceptance , I moved there quite some time ago the only trouble is it is like living with the stepford wives it is a false town where nothing is real , everything is pretence because you never really accept.
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON |
User
Hi Julie, I never really know what to post on your threads as your/Trevor's struggles have been so much harder than mine yet against all the odds you are still here fighting on for which I just wanted to give my admiration and thanks as you are inspirational for so many. Keep fighting, Kev
Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019 |
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morning all
I sit hear reading all your responses, read about all your ups and downs Trevors, Iruns, Nikonsteves, hull yorks to many to mention then the support of Julie, devonmaid,lynneyre again to many to mention
16mths ago I was not aware of any of this, we say our lives are not the norm this is true,and also are kept secret upto a point on here
but it also seems to me that our disease is kept secret, I check out places visited Dr, hospitals no where have I seen any literature on what to be aware of, we our family and friends tend to be the torch bearers
yes I am aware of the ad from the tv, but have you heard anyone who is not aware talk about it, wish I had the answers to my questions
so many come on here looking for guidance and help, can not remember how I found this site as no one from what I remember told me of it
regards
nidge
run long and prosper
'pooh how do you spell love' 'piglet you dont spell love -you just feel it' |
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Thinking of you both Julie...
Regarding google it helped me in two ways. When I get my initial PSA result of 20 I was told by the receptionist that it was recorded on the computer as normal. I googled this and arranged an appointment with the GP the rest is history.
The 2nd Google success is finding this site via Google
Bri xx
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Yet another twist and turn in this roller coaster ride! Everyone's ride is different - some have long stretches on the level where you can sit back and 'enjoy' the ride, some only get relatively short and turbulent rides. Then there are the slow upward sections - if you can just relax you can enjoy the scenery. But of course you know that once you reach the top of this section there will be a drop; it might be a little drop and then another level section or it might be a big drop. You just don't know for sure what is round the next corner. All we do know is that we are strapped in, the bar is down holding us into our seats and we can't get off. However much you scream or cry they never stop the ride until it's over - so we try to laugh - often hysterically but what else can we do. And in the long run we don't want the ride to end because we know that the last section is that great plummeting drop before it is actually all over. So we hang on in there, willing the ride to go on for longer, just glad to have our friends around us cheering us on.
So to Julie, Devonmaid, Glen T, Piglet and all the others on particularly turbulent parts of the ride - hang on in there, laugh and enjoy when you can and know that all your friends are behind you.
BTW I was a frenetic Googler excusing myself as I thought being a nurse would make me able to critically analyse the papers I read! What a load of tosh - I could never really understand research methodology and the terminology used. This site is real - real people discussing their journeys, feelings and all the 'little' important things that seem to get overlooked. No better source of support!
Edited by member 30 Jul 2016 at 10:52
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Rosy - I'm nominating you for 'post of the year'.
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Seconded!
And turn over damn page....
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Right you page gremlin !
Take this , and that , and this. Or else.
Turn the sodding page ....
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Ten working Cockers could barge through ▶️▶️▶️▶️▶️
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J
Go girl.
I think each page holds 50 posts. If I counted right this is post 50 of the page,so one more might do it.
Thanks Chris
Edited by member 31 Jul 2016 at 23:12
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