Chris J's Journey

User

Posted 11 Nov 2015 at 20:26

Chris

that sounds like a terrific compromise, you get to do the best you can through winter and in particular Christmas which with a little man in the house should be a special time always.

In springtme you have all the joys of summer to look forward to your RT will be done and your cancer given a really thorough bashing. Then the recovery really begins, it may be slow in some areas but it does give you the best fighting chance of all. I bet El is chuffed to bits today.

my very best wishes as always

xxx

User

Posted 11 Nov 2015 at 21:11

Excellent news - I think the delay until April will make RT more bearable for you rather than have to deal with it while the days and your mood are dark.

My guess is that chemo would have been a step too far anyway and I feel that your onco has probably taken a lot of advice from your psychiatrist about how much you can or should cope with at any one time.

Concentrate on that little boy having the best Christmas possible x

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

User

Posted 11 Nov 2015 at 21:59

Hi Chris,

What ever you are going through today, and it is more than some of us, I hope that you will be able to take a minute, look back and see just how much better you are coping with everything now. I don't say much on your posts because I can't help you. But, you are amazing young man. I hope you all have a great Christmas.

atb

dave

All we can do - is do all that we can.

So, do all you can to help yourself, then make the best of your time. :-)

I am the statistic.

User

Posted 11 Nov 2015 at 22:12

Hi Chris,

I very much echo Dave's sentiments. You and I started on this strange and often frightening journey together. Luckily, at the moment, I have been more fortunate with my outcome. I truly wish you well with the future treatments.

Look after yourself.

Paul

THE CHILD HAS GROWN, THE DREAM HAS GONE

User

Posted 12 Nov 2015 at 02:36

Hi Chris,

I just wanted to wish you all the best. You know we are always here for you. I'm not that far away from you if you ever felt like meeting up for a drink and a chat.

Keep in touch.

Steve

User

Posted 12 Nov 2015 at 06:46

Hope you enjoy the next few months as much as you can Chris, hopefully with little pain and some great fun over Xmas. 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 12 Nov 2015 at 08:33

As always Chris you have my very best wishes.

I am sad that you have to go through yet more stress.

I hope the ensuing months of quality time with the family give you the boost you need so that when April comes you are stronger in mind and body to cope with it all.

Thinking of you

Sandra

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

User

Posted 12 Nov 2015 at 09:14

Wishing you all the very best Chris.

Pablo

User

Posted 12 Nov 2015 at 10:52

Hi Chris,

I agree with Lyn waiting until spring seems the better option this way you will be able to enjoy Xmas with your family before starting the RT. Yes the Bicalutamide does sap your energy and for some (Trevor included) just generally makes you feel low. Keep one thought in mind though it is also making the cancer feel low.

I am often asked how we cope there is no magic answer just one foot in front of the other and we keep going because even if today is a bad day then TOMORROW my friend TOMORROW just maybe will be a better day.

May all your Tomorrow's be brighter.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 13 Nov 2015 at 15:18

Hi Chris

Just a note to wish you all the best with your forthcoming treatment and treatment plan.

I very much hope you can get through Christmas and the winter months. Thinking of you.

I would also like to thank you for the help and encouragement you have given me with certain issues I still have. This is appreciated more than words can say.

As you will see the strength of the forum is behind you and I hope this will help you in your darkest moments.

Kind regards.

User

Posted 13 Nov 2015 at 19:07

Hi chris

Wishing you well, hope you manage to plan some happy things to do over the next few months before your planned radiotherapy.

Although I find xmas can be stressful with all its planning I find the lights, xmas carols/music, food etc quite uplifting to my spirits. Hope it will be uplifting to your spirits also chris.

Take care,

Lesley

User

Posted 13 Nov 2015 at 19:17

Hi Chris
Wishing you all the best with you future RT. Just finishing my 37 sessions. The radiotherapy staff are brilliant, you'll be well looked after.
All the best
Colin

User

Posted 18 Nov 2015 at 17:19

Hello All
I saw my surgeon today as my Onco referred me last week re the continuing abdomen pain. Amazing just 7 days for an appt.
He basically can't explain it saying I may have slight diverticulitis or indeed post-op adhesions. I cant really see it but getting quite painful and waking me and constant. Scans are clear.
Strangely his outlook totally conflicted Onco . He said he hoped the HT i'm on and then RT in April will totally cure me , whereas Onco wasn't really offering anything solid and said I may be advanced now . He said lets do a PSA now whereas Onco said to leave it ??

Quick test and result in 3 hours ! PSA was 0.33 down from 2.4 after 8 weeks Bicalutamide --- HURRAH !! So there is hope yet. The test also showed my tummy isn't diverticulitis. The Renal function showed low Creatinine ??

So now a clear xmas and grit my teeth for April , and hope the pains don't get worse.

I'm exactly 5 months post-op and still 100% continent unless I have a skinfull. I'm still totally impotent with no natural function noted whatsoever. But he said it was early days
All my best to everyone
Chris

Edited by member 18 Nov 2015 at 17:23 | Reason: Not specified

User

Posted 18 Nov 2015 at 18:03

Nice that you have some good news Chris.

atb

dave

All we can do - is do all that we can.

So, do all you can to help yourself, then make the best of your time. :-)

I am the statistic.

User

Posted 18 Nov 2015 at 18:13

Sounds like a great result to me Chris, hope the pain subsides. 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 18 Nov 2015 at 18:27

Sounds like good news to me as well - really pleased for you.

Hope the pain eases soon.

Don't give up!

Best wishes.

User

Posted 18 Nov 2015 at 19:14

Chris

that is wonderful news which has made me smile from the inside out.

I was going to be Sans Alcohol tonight but now I am having a glass of wine later

Now focus on Xmas with your little man and your family.

For your tummy pain have you tried an anti spasmodic like ibuscopan? ask your GP if that might help.

best wishes and hugs

User

Posted 18 Nov 2015 at 19:54

Great news Chris.

I've had diverticultis for years and recently had a bad bout of that when on holiday in Majorca that and IBS (so bad I got our daughter to make and appt at our GP's asap for when we got back from holiday.

Buscopan and Mebeverine seem to work well.

Glad about the news anyway

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

User

Posted 18 Nov 2015 at 20:01

Great news Chris....onwards and upwards

Bri

User

Posted 18 Nov 2015 at 22:32

Chris, that news has also made me, and a lot of others, very happy.

Sincerely hope the pain gets sorted.

All the very best,

Cobbles

User

Posted 19 Nov 2015 at 10:29

Chris,

Great to hear. You were overdue a bit of good news.

Paul

THE CHILD HAS GROWN, THE DREAM HAS GONE

User

Posted 19 Nov 2015 at 11:02

Thanks for your replies all. Need to just really wind down now if I can . I'm like a spinning top just in control .
Its tough as most of you know better than I . Such a long intense experience from diagnosis, with seemingly no end for most.
Thanks
Chris

User

Posted 19 Nov 2015 at 14:53

Great news Chris, really pleased for you. Settle back and have a great Christmas with the family, when it arrives.

Steve

User

Posted 19 Nov 2015 at 16:03

Great news Chris

Time to relax as best as you can

Arthur

User

Posted 19 Nov 2015 at 20:20

bet you had a bounce in your step after that news Chris enjoy xmas all the best Andy

User

Posted 19 Nov 2015 at 22:53

Hi Chris

Same here mate, good news.

Enjoy your Xmas with family and try to forget about April for a wee while.

Sandy

User

Posted 19 Nov 2015 at 23:02

Brilliant news xxx

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

User

Posted 20 Nov 2015 at 09:47

Top News! :-))

User

Posted 02 Dec 2015 at 17:43

Hi All
Elaine and I saw my family GP today for the first time in ages. It was a great review of Onco appt , Uro appt and tummy pain , ED issues , adrenal tumours and re-scan in a fortnight , and also Psychiatry review. If I was a horse I wouldn't be good enough for glue I reckon.
One thing that struck us both is that we haven't had ONE single letter about my cancer. It has all purely gone to GP and not been copied to us. He turned the screen to us and we read the latest Onco letter together. We were dismayed to read that the " future RT would not offer any increase in life expectancy but would purely prevent a recurrence of cancer in that area and the associated symptoms ". Grim heh !!
I know I'll get to March ( planning scan ) and then bottle-out again. I'm all done being fiddled with tbh.
Thanks everyone for utterly invaluable support.
Chris x

User

Posted 02 Dec 2015 at 18:28

I like to have all the paperwork relating to John's cancer and everywhere we have been I have asked for it. If I am any missing I ask the GP receptionist to photocopy their copy and let me have it and so far they have been very willing.

If you really want to have a record of the processes you have gone through then perhaps ask the receptionist?

I am sorry that the written words you did see offered you no encouragement.

Easy for me to say but forget March for now. Live for these magical times for Peter, make his memories now while you are fit enough to enjoy them with him.
March will come quickly enough I know, but there is nothing you can currently do so make the best use of the season.

You will get pleasure (and sadness) out of it I know but do your best for your little man.

Chin up young man. You can do it. x

Edited by member 02 Dec 2015 at 18:39 | Reason: Not specified

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

User

Posted 02 Dec 2015 at 18:42

Really feel for you Chris, sorry how you and Elaine had to read the letter on GP screen not the right way , if I remember he was not positive previously and urologists was more hopeful have you heard anything from him, keep going mate will be thinking of you Andy

User

Posted 02 Dec 2015 at 19:32

Hi Chris

Sorry to hear this, not the proper way to find out.

I didn't have all the paperwork either until I asked for copies to take for a second opinion, these were given with no problems as you are entitled for a copy as it is your personnel details.

I really believe that given what was in the letter you should have been informed.

Sandy

User

Posted 02 Dec 2015 at 20:02

We've not been let down exactly. The Onco told us the same in a roundabout way tbh. And my GP is absolutely lovely. I guess it was just hard to see it written down when it took us so long to pry it out of the Onco verbally. But yes xmas going to be epic. And no real worries. And March is a while away and brighter mornings.
Chris

User

Posted 02 Dec 2015 at 21:58

Hi Chris,

Not the best way to receive such news mate, it should have been handled very differently. You are not the only one to be given bad news handed to you like a house brick in the face. One of my PSA tests was given to me verbally as thew wrong number and when I asked about the apparent rise, and expressed concern, the Doctor told me that "You don't need to jump off a bridge yet". Knobs all.

Chris, you have come along so far since you started, and overcome and dealt with so many issues, and the next few months will be no different. You may get to March and bottle out, but you have thought that before, and then you have summoned the courage to crack on and move forward, get treatment and move on.

And if you have a wobble, a big wobble or a total melt down, we'll be here to steady you young man. And we will all cross that March bridge with you when it comes.

You have a good weekend, plan to have a great Christmas, put OTT lights up, put cheesy songs on and enjoy.

atb

dave

All we can do - is do all that we can.

So, do all you can to help yourself, then make the best of your time. :-)

I am the statistic.

User

Posted 03 Dec 2015 at 00:32

Well you know my view - I think it will be fine to get to March and decide that RT is not a sensible forward plan. I assume that what the onco was saying was that because he doesn't believe the remaining cancer is in the prostate bed, RT to the prostate bed is a bit like a shot in the dark. So be it - maybe after the winter you could push for a repeat scan or get onto the trial John is doing with the new super sensitive scanning agent to see if any hot spots show up? If at some point in the future the scan produces a glowing area you might feel that RT to that area has a purpose and that would make it much more a good option.

No point stressing now though - you can decide you aren't doing it (but not actually tell the medics that yet), put it away in a box and get on with coping with everything else.

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

User

Posted 03 Dec 2015 at 00:35

Chris

It is reading stories like yours that make me realise how lucky I am. I hope you will be able to face everything full on when the time comes. Meanwhile, have the very best Christmas you can.

Paul

Stay Calm And Carry On.

User

Posted 03 Dec 2015 at 09:59

Hi Chris

I am so sorry to hear this news but the strength of the forum really is behind you all the way.

Thinking of you at this difficult time. You may not agree but from the way you have handled your PCa journey and associated problems you have earned my utmost respect and admiration and this has helped me with my own journey (which is nothing as difficult as what you are going through). I cannot thank you enough for this. I do hope that somehow it will all work out alright in the end for you and your family.

Sending you my best wishes.

User

Posted 03 Dec 2015 at 15:33

Yes just to echo what countryboy said,my husband and i were told by hospital registrar when we went for biopsy result,

"Well youll be pleased to know your cancer hasn't got any worse",that was a bolt from the blue as this was the first time we had been told he had cancer!! Our best wishes to you.

User

Posted 03 Dec 2015 at 22:23

HI Chris,

I can only echo the wise words you've already received from the wise people on this site.

Christmas is the thing for you now - March is way out there somewhere !

Very Best Wishes To You And Your family

Cobbles

User

Posted 04 Dec 2015 at 13:59

Read your thread pal.
As commented by William what a strong mindset you have.
Have a brilliant Xmas.
Adios

User

Posted 04 Dec 2015 at 15:27

Thank you for some very kind posts , maybe not merited.
I'm good at hiding stuff. I'm desperately unhappy at the moment. Future a bit bleak. Heartbroken with the impotence. It's eating me up to be honest. I feel awful.
But thanks so much for gud wishes
Chris

User

Posted 04 Dec 2015 at 16:57

So sorry you feeling this way Chris,you don't know me like all the friends you've come to know over these difficult years and you are indeed very brave,but yes we all have to say how we really feel sometimes and this is how you feel,nothing wrong in expressing this! Best wishes to you both.

User

Posted 04 Dec 2015 at 17:32

XXXXXXXX

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

User

Posted 05 Dec 2015 at 15:38

Chris

Never be afraid to post and express your feelings we are all here for you.

You know you have a small network of people you can message at anytime even if it is to just let off in expletives that possibly describe what you would actually be rather doing.!

In all seriousness I know just how much the ED is getting to you. I wish I had words that could make that easier for you.

You are a mighty person and I have so much respect for you.

Stay strong, put happy photos up all over the walls and keep the dark evenings out with closed curtains. Only another 16 days and then every day for 6 whole months it gets a little bit lighter.

Xxxxxxx

Hugs and much heartfelt lovieness

User

Posted 05 Dec 2015 at 21:53

Chris,

I just wanted to add my thoughts this journey can be pretty darn Tish at times. Even though I try and do my light hearted posts I know that most will read between the lines and see how I am really feeling and thinking. Never be afraid to express how you are feeling on the forum quite simply we get it, we understand, and we are here listening and supporting.

You have come so far and you can continue , with all of us behind you .

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 28 Jan 2016 at 20:32

Hi everyone
Just a journey update really and for anyone who is interested.......
Pretty much dragged myself through the dark months. Still off bipolar meds since discovering they were killing my white blood cells. Sleep is my nemesis and controls my mood. Still on sleep tabs and diazepam when I get desperate.
To be fair I wake up thinking about PCa , spend a lot of the day doing the same , lie awake at night restless , and when I do get to sleep sometimes dream about it. I don't really know my prognosis but am realising this level of angst is unsustainable.
HT bical150 is now 4 months and is acceptable. RT still 2 months away. Will prob go ahead but likely to give it the full diva a few weeks before. I've asked about 20 sessions instead of 33. I've asked about permanent HT as the RT is not for curative reasons. No answers. They're busy I know.
ED-wise the pump is still great , Caverject just does the job , due to try Viridal soon but similar supply probs to Caverject. Recently done 6 days of 50mg Spedra ( Avanafil ) but not a stir. Although on HT I still have desire. It's very upsetting for me.
My biggest concern at the moment is that I have a lot of swelling in my armpits despite no obvious infections or ill-health. No pain and not solid , just a lot of fluid. Obviously worried as I had 5 lymphs cancerous and post-op PSA rising to 2.4. Doctors the normal wait for an appt. , and both hospital nurses on leave.Abdominal pain still daily and unrelenting. I expect another unplanned visit to Onco before planning scan to discuss stuff.
I'm not in the best of places tbh but far more fortunate than some of you I realise. I'm trying to make the life that I saved more pleasurable and productive , rather than an utter stress-fest !!
Wedding anniversary tomorrow. Not a great 12 months but yes you guessed it , I wouldn't have made it through without my lovely wife Elaine and her amazing support. And of course all your help off and on.
Best wishes
Chris

Edited by member 28 Jan 2016 at 20:41 | Reason: Not specified

User

Posted 28 Jan 2016 at 22:20

So I hope you are not expecting a normal not humours reply from me.

So firstly I will get the slushy stuff out of the way have to say what a diamond you are, your responses and commitment to the forum well they just blow me away. What a Guy . I don't think you realise just how much you help others with your comments. Honestly admiration in buckets😍

So this stump that you are talking about we haven't been offered this ( sorry just re read pump)😉 Ok I get it know sorry can't offer any advise on a sexual nature although in my hey day ( see avatar) 😛Give me a glass of Pinot and wind and grind reggae tune well whoooo hoooo. I hope you are smiling know.

I don't know anything about bipolar but depression with living with PCa well let me tell you I am thinking about writing a book, this roller coaster that we are all on is so so hard , most people my self included try and write positive things for others to read but honestly if I wrote my actual thoughts then it would be whole different story.

Never feel that you cannot reply on my thread no you are not in the big boys camp (HELL No ) and fight to stay out of our camp , give it everything that you have. I know it is hard for you but go for it.

Divas what can I say , I just love a diva it makes my day, Diva away and be proud🤗

Having failed my doctorate I would say the swelling is fluid But get it checked with your GP , Trevor has swelling in his neck and this has been for probably 2 years plus the sad thing is when we get a diagnosis of cancer then every lump , bump , ache , sneeze, or fart sends us into a spin.

I have emptied my inbox so if you want to pm me then pm away.😘

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 28 Jan 2016 at 22:32

Evening Chris my man.
What's wrong with the occasional whinge - you've certainly got enough to whinge about, you and some of the others.

A lot of us are more fortunate than a lot of others but it all helps put things in perspective doesn't it. Well it does for me anyway.

Have you asked the nurses on here for some interim advice? They might point you in the right direction.

Anyway, just wanted to say sad for you that your heading towards the dark place. I hope the Anniversary tomorrow is a great one. Whether you celebrate it with a bit of "artificial" help or just a cuddle, you'll be sharing it with the love of your life with the added bonus of "the little soldier" adding to your excitement and pleasure.

You're still here to celebrate it and they'll be plenty more yet.

All the best for a Very Happy Anniversary

Edited by member 28 Jan 2016 at 22:33 | Reason: Not specified

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

User

Posted 29 Jan 2016 at 03:33

Hi chris
Happy anniversary
Enjoy the day with your OH

Regards
Nidge

run long and prosper

'pooh how do you spell love'

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

User

Posted 29 Jan 2016 at 08:45

Hi Chris,

Have a very Happy Anniversary!

I'm sorry you have been suffering a very low mood, it's hardly surprising with everything you're going through. I've had an awful month so I totally understand how you feel. I haven't felt like posting because I feel ashamed I feel this way. I've just wanted to sleep.

Anyway, stay strong and try to enjoy these special moments (anniversary).

Best Wishes,

Steve

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