This is where we are.

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Posted 15 Jul 2016 at 09:12

Morning Leila,
Chris and John have given you very good advice.

I doubt that anything any one of can say will reassure you about the future. None of us know what that is, even if we didn't have cancer.

Hopefully what will help is the continued support from all of us.

This feeling is a sort of anti climax. You originally geared yourselves up for the knowledge of PC, diagnosis and treatment and the worries they produce are a great strain, not only on the body but on a relationship.

You are out the other side now, with good news so you go up on an emotional high but that background fear is dragging you back down again and will continue to do so if you let it, therefore it will "spoil" the future.

You cannot change that future so let it be that. The future. Today is the important day. The one that is there in front of you both, and it will continue to be.

I hope you can both get over this blip, in fact I'm sure you can. You are together for each other . Live for each other - let the future take care of itself

We can't control the past so we live with our regrets and memories. We can't control the future so live for today.

All the best

Sandra

PS the following quote is one of my grandson's favourites. Having had inoperable cancer at 13 he too has the constant fear that it will return but he living his life to the full and this wording was given to him while undergoing treatment.

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Edited by member 15 Jul 2016 at 17:29 | Reason: Not specified

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

User

Posted 15 Jul 2016 at 17:09

Dear Chris John & Sandra,

Thanks for reading my post, and your sensitive replies.I think I'm getting my head around it all. Time is a healer, I suppose I wanted confirmation of a ' cure' although intellectually I'm aware this is not possible, emotionally I was ever hopeful. We are delightfully happy, and have lots of wonderful things in our lives. Getting this diagnosis was a real pain in a#$€.

I've had a career I love, David has followed his heart and been a pro musician all his life and are both fortunate enough to work when we want to, now that ain't bad.

I've gone from scared to angry with all stops in berween, feeling why us, why not us, why him. All this I know is futile, my professional background has taught me to manage all this in the world of work, but how different it is when it's your own loved ones, all that life long learning professional stance goes out of the window. We had a long chat peppered with tears and hugs, agreed we want to enjoy whatever life we have ( hopefully a long time:) so, delight in the day.

Sandra, your grandson is a wise insightful young man, I'm sure you are very proud of him and his insight. My thanks to him for wise words.

So, today, planning to have my nephew for part of the summer hols, booking some weekends away in the autumn we have a small holding so summer can be busy. Booking an appointment with the ED nurse.

We are both 61/ 66 respectively young at heart, reasonably fit and lots of living to do.... So getting all this into a manageable perspective seems like a plan, book some holidays, write music and breathe.

Thanks again.

Leila x

User

Posted 21 Jul 2016 at 00:17

David will have a scan in December, he has been advised by the onco this could be quite informative. Would it be a good idea for him to have a Choline Pet scan, or a Tesla 3.MRI scan.He is on HT for another 2 years. He is G9 PSA <0.1 after treatments
HD
Brachytherapy in April & RT in May 23 sessions.Advice and views would be appreciated.

Thanks Leila

User

Posted 21 Jul 2016 at 07:24

I was initially given the option of 3 yrs HT , including HDR Braccy , then RT on top. Truth is I couldn't make my mind up and was eventually forced to have surgery which was too late. So whilst you treatment plan seems fine , it's quite a wait till Xmas. I will be having a second Choline PET at Xmas when my psa is between 3 and 5. I've been told they are next to useless at very low numbers , but others will disagree. Keep faith Leila ( Eric Clapton in my head all day now ) x

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Posted 21 Jul 2016 at 09:09

Thanks Chris,

I'm emotionally stronger now, well most of the time :-) the oncologist advised 6 months until the next scan. Our GPs seem to be supportive since our letter telling them we'd lost confidence in them as they did not refer David for three years.

I'd read about the Choline PET scan and wondered if it was a better option. Why do you think Xmas is a long time for a scan? I'm aware that consultants seem to have their favourite treatments and ways.

Yes, he finds the HT a real pain, lost any libido, tired and achy, we both miss the physical side of our life together, seeing the ED nurse soon. He's not convinced, but wants to give it a try. The physical part of our marriage has been kicked into touch apart from once this year, so any advice we can get to ' stimulate' it would be beneficial.

I'm keeping the faith , David is supporting a drummer mate who has lukiemiea and we are both enjoying summer. He's bought another new gizmo peddle for one of his guitars so he's happy. I'm booking some work away in the autumn,he's talking about gigging locally so yes, I think we are beginning to get some sort of settled time.

Thanks for your support. Today will be a day in the studio for him and the new compression peddle.

Thanks

Leila.

Edited by member 21 Jul 2016 at 09:16 | Reason: Not specified

User

Posted 21 Jul 2016 at 10:43

Hi Leila
I'm being a numpty so ignore me. A scan at Xmas is fine and his PSA is really good. But as I've said , I've had 3 people advise PET scan isn't effective below PSA 3. That's why they not scanning me at 0.14 , and taking me OFF HT so that the cancer and PSA can grow enough to be visible.
As for the physical side it's great that you have an ED appt. There are loads of things to try , some effective , some not. It takes a lot of love and some fun and plenty of disappointment to try to make it work. However at 13 months I have to say we are both getting to the stage where a proper erection during intimacy is not possible ( and I've now lost 2" in length to cap things off ) , so I've kind of given up trying. Very saddening at our age !! Just keep keep keep talking and lots of love and support etc. I don't feel like a man anymore and it can get very disheartening. Good luck

User

Posted 21 Jul 2016 at 11:33

Chris, you may not be the "man" you were but you plod manfully on, which given your circumstances is excellent.

I hope that between you, you and El can still achieve closeness.

Leila, I hope you and David get some usable advice from the ED nurse. Although the sexual context is lovely it is the general feeling of well being and contentment that goes missing a bit if ED kicks in.

Good luck with it. I really hope something works for you, although perhaps when the HT comes to an end, libido will reappear.

As I understand it from those who've posted regarding ED, there is the possibility of penile atrophy so maybe just keep trying in order to keep the muscle "strong" enough for later. Maybe if David thinks of it in terms of future benefit he might be more inclined to keep trying.

Best Wishes

Sandra

*******

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

User

Posted 01 Sep 2016 at 10:33

David has been on HT for over a year now, two years to go. He gets days of tiredness. He has a dull ache in his right side and recently he's developed a headache. He has discussed these with his GP who has examined him, and says he can find nothing. David is understandably concerned about these symptoms. He is seeing the oncologist in mid October. Has anyone else had these side effects and should he be pushing to see the consultant earlier. He had HD Brachytherapy and one month of RT. In April May & June this year. He is G9 and his PSA was 8.8 at diagnosis, last PSA was 0.1

We are managing the garden, with two poly tunnels and just under an acre of land, we walk every day,or trot up the hill.... Eat well enjoy red wine a diet of fish occasional chicken lots of veg home grown veg salad and fresh fruits. David is also taking Pom-t B 17 glucosamine vitamin D St. John's wort garlic and his meds for blood pressure.

We eat lots of cooked tomatoes, soya milk and very reduced dairy intake.

So, all this and he's not feeling as well as he'd hoped,, and questions if this is side effects of HT or should he be pushing for more in depth examination.

Comments and advice would be welcomed please.

Thanks leila

User

Posted 01 Sep 2016 at 13:33

Could be urinary tract infection Leila - or proctitis. Ask GP for a thorough urine test, maybe?

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

User

Posted 06 Sep 2016 at 11:07

David started using his ED pump this week, it has made his skin really sore, to the point where he's not at all comfortable. He has a burning sensation around the area. He was initially pleased and excited to get the pump & viagra, as was I, we saw next stage of the journey. This soreness has knocked him back a bit, both physically and emotionally. Did he start using the pump too early, finished RT in June, the burning area seems to be his lower abdomen.
I'm aware radiation burn can be an issue, we have been very skin careful, he' has a fair light skin and can be skin sensitive. The trauma and spin off of this cancer affect every scintilla of daily life, we are on the whole a resilient pair learning how to manage this and enjoy life,. If he's feeling good we are going away for a special treat this weekend. Thanks again.

Edited by member 06 Sep 2016 at 11:08 | Reason: Not specified

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