Chris J's Journey

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

If life gives you lemons , then make lemonade

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

If life gives you lemons , then make lemonade

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

User

Posted 29 Jan 2016 at 10:53

Hi Chris. Thankyou so much for your contributions that make us feel better. I hope you enjoy a wonderful anniversary with your wife. Georgina

User

Posted 29 Jan 2016 at 12:06

Hi Chris,

Like you my sleep paterns have been all over the place recently.

One of the problems is that because I am retired I can lie in untill 9 or 10 in the morning, and often do when I haven't got to sleep untill 2 or 3 in the morning.

There was a programme on telly the other night, which amongst other things tackled insomnia and highlighted the fact that we need daylight to set our body clock's rythm.

So last night I set my alarm clock so I was up promptly at 8 this morning, hopefully that may help me tonight, I will let you know how I get on.

AND don't worry about being depressed and grumpy, we are all at the Victor Meldrew stage of life, I only have to switch on the TV or radio news to get angry about some dam fool politian talking rubbish, so just accept it is something that goes with getting old.

After all, it is being so cheerful that keeps us going!

Dave

User

Posted 29 Jan 2016 at 18:06

Hi Chris just to say I hope you and your wife are having a lovely anniversary - Paul and I are 24 years this April can't believe where the years have gone. You are always there to support others including me so yes you are certainly entitled to share your feelings when are you low and hopefully we can help you. Jayne x

User

Posted 29 Jan 2016 at 21:19

Chris

you are doing so well, I have been really pleased to see you constantly supporting other people and now you are posting on your own thread. First time in a while but I know that you will be looking to all of us to help you as much as we can as your treatment gets nearer. We will be here.

User

Posted 29 Jan 2016 at 22:06

Hi Chris,
This swollen armpits business .... have you asked the GP about it in case you have a bit of an infection or a reaction to one of your drugs?

I hope you treated El to a very special day x

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

User

Posted 30 Jan 2016 at 08:52

Hi Chris,

Just to let you know that the alarm clock method seems to be working for me, yesterday despite falling asleep, mid-afternoon for an hour on the sofa, I was off to bed just gone midnight and (with two toilet breaks) slept through to 8 this morning.

Left to myself I would have slept much longer, but am now up early, bright eyed and bushy tailed, thanks to the alarm.

And I am even feeling a bit cheerful

Dave

User

Posted 30 Jan 2016 at 09:13

Thanks Dave
Although I am " lucky " enough to be retired at 48 , I have been blessed with an exocet rocket called Peter who wakes us all normally just after 6 am , and I make sure we are both up to get him to school on time . I then have the rest of the day to do stuff involving the lions share of shopping , cooking , ironing. I read with the kids at school also twice a week . I try to keep a little bit busy . Problem is I'm shattered in the afternoon . Literally nodding off , but when I close my eyes it doesn't happen. Same thing at bedtime although I try to keep to 10.30 pm . Its a nightmare . I seem to spend 3 days getting exhausted progressively , and then nature takes over and I have to sleep . Never feel refreshed in the morning ever though.
Thanks everyone for posting. I've decided to not bother the Dr's with the armpit thing. Its not causing me any grief . The nurse specialist at my hospital is going to tell my Onco , and ive also enquired about 20 sessions RT , so I expect I may get a call in before planning scan March 5th. Hopefully my mood wont deteriorate sufficiently for me to go into Diva mode and start throwing my toys out the pram and cancelling stuff. Best wishes to each of you
Chris

If life gives you lemons , then make lemonade

User

Posted 30 Jan 2016 at 21:05

hi chris ,

i hope you have a lovely anniversary!

you have been a great help to me and im sure many others on this site , with your knowledge on Pca

you are extremely strong to tell us your feelings .Many posts you have written i find a connection too .

keep posting you're a top bloke !!!

regards

Gary

User

Posted 31 Jan 2016 at 00:30

Hi Chris,

One of my favourite comedians was Les Dawson, I particularlly liked this one of his:

'I haven't spoken to my mother-in-law for 6 months, I haven't been able to get a word in edgeways!

I fell for that trap this afternoon, went around to see the in-laws, sat down on the sofa, listened attentitively to my mother-in-law, then woke up to find that I had managed over an hours kip.

So now it's half past midnight and I am as sleepy as a box of frogs.

I don't know if your in-laws are still around, but there is one possible solution to insomnia?

Dave

User

Posted 04 Feb 2016 at 13:43

Hi Everyone
My decidedly better half Elaine discovered last week that in our local village literally 5 mins away is a Wessex Cancer centre. She went and had a chat and today I went on my own and introduced myself. Admittedly a big gang of women eating cake and drinking tea but what a WONDERFUL welcome by lovely caring people. So many thanks to this organisation.
As you know I'm just a bundle of nerves and stress at the best of times , and today have been offered a weekly yoga class or massage or Reiki. And one to one councelling if I put my name down. How can that not help ?? The yoga guy said he could change my life ............ or what's left of it anyway ........... watch this space !!
Thanks to you all
Chris

If life gives you lemons , then make lemonade

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