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Chris J's Journey

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User

Posted 05 Oct 2015 at 14:47

Hi Chris,

Really sorry to hear of your struggle.As always people on hear to offer support. RE. the dark nights and your low mood, have you considered a Seaonally Adjusted Depression Lamp?

Paul

THE CHILD HAS GROWN, THE DREAM HAS GONE

User

Posted 05 Oct 2015 at 15:16

Hello Chris

Sorry to hear your struggling at this moment, there are a lot of us on here to help you through the dark days.

Remember we need you here with us.

Wishing you all the best

Colin

User

Posted 05 Oct 2015 at 17:15

Hi Chris

I am sorry to hear you are struggling.

I wish I could wave a magic wand for you to make things better but sadly that is not possible. Just wanted to say something to try and encourage you not to give up.

Sending my best wishes for you at this difficult time.

User

Posted 05 Oct 2015 at 17:33

Hi Chris, I can't wave a magic wand either, much as I'd like to for all of you.

I am writing to you from my holiday in Majorca though to repeat what I've said to you before.

Dark thoughts are normal for all of us at times, for you those dark times are part of you and have to be lived with whether you like it or not..

There is no shame in having a whinge, God knows you have enough to complain about and if you haven't got the strength to fight it alone then that's what we're here for, even when we are on holiday !!!

You've probably already got the SAD lamp anyway haven't you,given your history?

Try not to dwell on the POSSIBLE negative sides of the RT. It might not happen.

Get a really good photo of your ever supportive other half with Peter and carry it with you.

Yes the journey through the cold and the dark will be a right pain in the **** but when it really gets to you just get that bloody photo out and remember you have a reason to fight .

You're not whinging or weak. There's nothing wrong with asking for support.

You've got it friend and don't you forget it !!!

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

User

Posted 05 Oct 2015 at 18:02

Thanks for the replies guys. I've had such a wretched day barely able to get up and just full of tears. By coincidence we are seeing my Psychiatrist tomorrow morning so we will see what she thinks. But the truth is I haven't found a fight. I didn't have one before the op and I have less of one now. Instead of embracing the chance of further treatment , I'm actively rejecting it. El is aware.
I do have a SAD light and use it but I think my issues stretch beyond that to be honest. I also have a picture of my family in my wallet , and some little notes from Peter. It's fair to say my mind is seriously stewed obviously , and I'm sorry if I have offended anybody with my feelings. I'm literally stuck in a rut and all I really want to do , is to do nothing at all.
Chris

If life gives you lemons , then make lemonade

User

Posted 05 Oct 2015 at 18:28

No one can make you have RT and it is your right not to take the hormones if you don't wish. But I think you are comparing apples with pears to be honest. Comparing how you might feel on HT with how you feel without HT - comparing what a drag RT in the winter will be like with a winter staying at home cosied up.

That would all be fine if it wasn't for the fact that life without any treatment will not stay the same as it is today. At some point, the untreated cancer would run amok around your body and make you feel much worse than the hormones will.

So don't compare being on HT with how you were two weeks ago before HT started. Compare being on HT with being in the end stages of an uncontrolled cancer.

You may be aware that my father-in-law decided not to have any treatment because he was worried about side effects. He lived for 4 years. It was his right to make the decision but I think if he had known how quickly he would be taken, he might have had a re-think at some point.

There is no reason why you have to have the RT in winter - research is starting to show that the longer you take HT before starting RT the better and many oncos seem to go for 9 months now rather than 3 or 6 months. Perhaps you could stick with the HT for now and leave the RT question to one side until next spring? If it is any consolation, many men report that the initial side effects of bicalutamide settle down after the first couple of weeks so you will not necessarily feel the same this time as you did last time you were on them.

Lots to discuss with the psychiatrist tomorrow x

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

User

Posted 05 Oct 2015 at 18:42

Just for info. I started HT in the January and didn't start RT until the October which sort of confirms what Lyn is saying.

Arthur

User

Posted 05 Oct 2015 at 19:22

Hi Chris as you know i have done the 33 trips to hospital for RT after RP which i found a pain driving a 80 mile round trip but soon got to make friends at the hospital as same faces where there every day , the days seem to pass by and i must admit missing the others when it came to a end ,I hope you can find your way out of the rut. All the best Andy

User

Posted 05 Oct 2015 at 20:31

Chris

I am posting from a ship in the ocean off the coast of Nova Scotia ..just to let you know I am thinking of you.

Listen to Lyn hear her words she is one of the wisest and most forthright people I know.

Xxx

User

Posted 18 Oct 2015 at 14:37

Hello !
Well 16 weeks now and I'm in more pain than immediately after the Op. Deep deep abdominal pain in the bladder region. Pain when weeing, pooing and keeping me awake all night. Painkillers not working. I've stayed on the HT ( bical ) for one month. Obviously it isn't a horror tumour as I've had a PET scan.
I have an MRI Tuesday and Oncologist Wednesday. I have two 1/2" tumours on my left adrenal gland which they want to look at again , but will check bladder also. My lovely GP dog-walking friend feels I may have "" Adhesions "" where my internal scarring and incisions have glued to the intestines , causing mucho pain. I've not heard this mentioned on the forum. I've had two clear urine infection tests.
Been sent my 33 RT sessions starting 27th Jan with planning 7th Jan. Not sure I'm doing it yet as they have stated with Post-Op PSA 2.4 it may not benefit me at all ( but advisable ). But they don't have to live with the side-effects do they , which quite frankly is getting harder and harder.
Sorry for a Sunday rant but for me to take painkillers at all is a marvel , never mind at 6am when I have to get my lazy ass out of bed. I realise many on here are far worse off than me and respect that immensely. Just very unhappy indeed .
Chris

If life gives you lemons , then make lemonade

User

Posted 18 Oct 2015 at 15:02

Hi Chris, in the wars again eh? Bless you.

Adhesions can be very very painful so perhaps your GP friend is right.

Won't comment on your planned RT as that is for you to decide, just wanted you to know I'm still listening - so rant away.

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

User

Posted 18 Oct 2015 at 15:04

Chris, I'm still very new on this site, but my thoughts are with you my friend.

User

Posted 18 Oct 2015 at 15:59

Hi Chris,

I may be totally wrong, but your symptoms sound similar to what I had a couple of months ago, pain urinatiing, occasionally passing blood, a dull but noticable pain whenever I sat down, and after a few weeks of that I started a bit of a fever.

My GP tested for urine infection and all was clear, it was my Consultant who diagnosed an infection of the prostate, and that was 6 months after the intrusion of brachytherapy. 6 weeks worth of antibiotics seem to have done the trick as I am feeling much better now.

Only two days to wait, I am sure your guy will sort it out?

Dave

User

Posted 18 Oct 2015 at 16:06

Thanks Dave
This ain't dull !! Like awful awful childhood constipation. Yet bowels normal and wee normal although painful. Prostate long gone friend so not that. Will try to wait till weds , but Paracetamol, Codeine , and Ibuprofen all together ain't touching it.

Edited by member 18 Oct 2015 at 16:08 | Reason: Not specified

If life gives you lemons , then make lemonade

User

Posted 18 Oct 2015 at 19:25

I suppose there's no possibility that you have something else like IBS is there?

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

User

Posted 18 Oct 2015 at 19:36

Thanks Sandra but think not. I've spent my life plagued by anxiety stress etc with no gut problems. I mean I've been out with the dogs etc but this is progressively worse and I've never once been ok since operation. I'm sure it will be fine -- as I've said I've been scanned to eternity and back. But I'm in tune with my body .....

If life gives you lemons , then make lemonade

User

Posted 11 Nov 2015 at 18:01

Hello folks
Just finished 40 mins with Onco. He said pelvis MRI still clear , but due to my results the team feel I am advanced and aggressive. He insists I have RT as in his words recurrence of cancer in the pelvis and the symptoms and the ensuing death are extremely not nice. He said he only saw a case like mine every couple of years ( trust me ).
Despite 5 lymph nodes being cancerous he said he wouldn't treat the lymph area as it would give me Lymphodoema. His eyes spoke a lot to be honest. I guess he was trying to tell me something. A very very lovely guy.
Because of my extremely fragile mental state over Xmas he has agreed to delay RT until early April instead of end Jan. So I remain on HT till then.
Thanks everyone for support and especially 2 amazing people who know who they are , whose help has been vital to me.
Chris

If life gives you lemons , then make lemonade

User

Posted 11 Nov 2015 at 18:26

Hi Chris,

Did the onco mention the possibility of blasting the cells with chemo too? I seem to remember reading somewhere about possible combination therapy. I'm hoping Lynn knows more - Lynn?

Flexi

User

Posted 11 Nov 2015 at 18:46

Nothing on offer till after RT. He wants to ensure prostate bed treated whether it has moved anywhere else or not.
Chris

If life gives you lemons , then make lemonade

User

Posted 11 Nov 2015 at 19:42

Good luck Chris xx

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