This is where we are.

User

Posted 07 May 2016 at 12:18

David has had his first week of RT, so far so good. When I talked to him last night he said he had never felt so tired in his life. He's normally fairly active and gets things done, is this level of fatigue usual?

Coming back to the cottage I've hired for him near the hospital he said he felt so ill he was staggering. I'm going there tomorrow for a couple of days. I hope having company takes his mind off the fatigue.

As we live a long way from the hospital this was the best round his daily appointments.

His bowel functions and bladder seem to have settled down, as he was in some discomfort there too?

His initial aim was to work whilst he had the treatment, manages a bit of writing, but he says his concentration levels have dropped to an all time low.

Thankfully he can do a bit when he chooses, he's fortunate in that way.

Leila

User

Posted 07 May 2016 at 15:23

Leila,

RT fatigue is quite honestly something else. You have to experience it to appreciate it. But not all patients have it. It's not like normal tiredness, easily cured by a nap. For me it was like living in a vacuum , a fog, but was not there all the time. I had one day about 10 into the treatment when I felt so awful at work. ( worked am's , RT PM's) . Everything seemed fuzzy and concentrating on 2 computer screens was almost impossible. And everything became an effort. I had my weekly review with the senior radiographer that day and was told that my reaction was probably a tumor flare - the PCa reacting against the RT. It settled down after that.

I'm glad that you've found a cottage to be near your hopsital. Reduced travelling time will really help. And the bladder and bowel situation usually sorts itself out. Just ensure that he asks for help if he needs it , there are plenty of good meds around to assist. His centre will be able to assist.

Wishing you both well

John

User

Posted 07 May 2016 at 17:24

As mentioned above RT fatigue is quite different from the sort of "can't keep my eyes open" tiredness that everybody gets. Mine has really kicked in after 9 sessions although I noticed it after the first 4 or 5. I could best describe it as a genuine difficulty in putting one foot in front of another - a leaden feeling.

I find by not trying to do too much and by having a nap, I can manage it. It also comes and goes. This morning I felt particularly tired after nearly 9 hours sleep but that's on the back of 5 sessions. Writing this at 5 pm (ish) I am feeling a lot better. It's a matter of managing it and not getting frustrated - take that nap if you have to.

User

Posted 11 May 2016 at 11:25

Awww thanks chaps, he seems a little better this week. Though the tiredness is still with him, he seems to be managing a little better. David has always been a fit healthy lad, working and doing all the time. The treatment and diagnosis has been such a shock.
To anyone reading this who is just embarking on this journey, my advice is ask questions, take notes, read and research from well credited sources.

This website is brilliant.

I have been able to attend all David's appointment with him, take notes and ask questions, one consultant we saw was a little affronted when I questioned his statements ' we are going for a cure dear boy'
Well David is Gleason 9, and had just managed to approach the concept of management rather than cure. We both found his hail fellow well met approach scorchingly harsh.
Our usual onco was very professional, he raised eye brow and smiled, although it was fairly clear he was not in the same camp.Although we have been given quite positive information so far.

Yes, of course we want a cure, but please don't give us false hopes...

David has managed to do some work this week, though he says he feels his body strength has reduced, playing for 20 mins knackers him, and playing a heavy guitar is hard going. On the thinking level, he is concerned his brain has gone to mush, although he has all his equipment there to work he manages couple of hours a day writing and editing.

I will collect him on Friday, he can come home for the weekend, he is really looking forward to this, see his cats, check on the garden, and sleep in his own bed.

Thanks again,

Leila

User

Posted 23 May 2016 at 22:15

David is over halfway through his RT he had his halfway meeting last Friday. He is coping better now he we have arranged his treatments so he gets almost three days at home.
Last two weekends he's managed to do some work in the garden, this delighted him, and me, we have lots of garden. Although he gets very tired, he finds doing some practical stuff at home quite therapeutic, and we enjoy the results. He is aware the treatment is cumulative and he still has two weeks to go.

At the beginning of this journey we were scared, ill informed, I think we are a bit more settled and in control. We hope to have a good summer, and he is able to enjoy some time recovering.

David loves his cats, and missed them a great deal. The small female Suzie has managed to dismember two rabbits on the sitting room floor, and I was presented with live mouse at 5am, breakfast in bed.
The weeds in the poly tunnel are beginning to realise I'm in charge, and the tomato Poly is looking better. This year we Possibly grow less.
This disease has really hit us both hard, in many ways, reeling and recovery can take time effort and resilience. Keeping some routine and order in life has helped us through the toughest of times.
Summer hopefully will bring us the joys of friends to visit, getting back to out work schedule and seeing family, all these things help.

Early July a PSA test, then seeing the onco end of July.

If all goes well a decent holiday will be booked later in the year.

" it's not just what your born with but what you choose to bare it's not how large your share is, but how much you can share. It's not the fights you dream of but the ones ones you really fought, it's not just what your given, but what you do with what you've got "
Si Khan.

User

Posted 23 May 2016 at 22:27

Good luck for the second half Leila.

I wish him (and you) well.

Good luck with those weeds (and slugs - have you got slugs? those ghastly long yellow things that look like small snakes. YUK YUK YUK. I have !!

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

User

Posted 23 May 2016 at 23:17

Johan,Yes, we have slugs and a great crop of snails too. We don't use pesticides, but I'm dab hand with a spade at killing 'em. I also use salt but not too much.
The big yellow things are horrible, and yes we have lots of them too.
Running the small holding single handed is hard going, I've grown less this year. Concentrating on tomatoes peppers and strawberries.... And a few root veg. The spuds have sprouted and this year I've just let them. I think it's called wild gardening. Yesterday I gave a load of tomatoes away, too leggy to,sell and we have enough potted on.

I was a gardener many moons ago David had never grown anything until about seven years ago.we both love it. We are aiming at self sufficiency and not doing too bad. This awful disease has stopped us in our tracks. But we are determined to keep going. We don't have livestock, well, two cats one hunts, the other doesn't.

Thanks for your good wishes.

Leila.

User

Posted 14 Jul 2016 at 22:57

I have not posted for a while. David has finished his treatment HD Brachytherapy & a month of radiotherapy. He saw the oncologist yesterday, his PSA is now 0.1 the consultation has given us mixed emotions. David has a Gleason 9. It's hard to hear that the cancer might return, we have both found it hard going today. Has a further PSA test in three months and a scan in December, when he will hopefully get further details. In the meantime I'm sure we will enjoy the summer, as we can't change the future. If his PSA goes over 3 oncologist will review options. His highest PSA was7.5 yet tumour too bulky to operate.
Not sure how I feel, I'm trying to be strong for us both, but I'm wobbling a bit inside my brave and professional front. Reading other posts people here seem very emotionally resilient .... I do feel a bit of a woos.

Leila

User

Posted 15 Jul 2016 at 07:37

Leila,

Good to hear from you again and I'm pleased that David's score is now at 0.1. I can understand what you have written though. You should be pleased but there is always that fear of recurrence behind you too ? This is a horrible disease and there are always uncertainties with it. I'm seeing my Onco in just under 2 weeks now, 18 months post RT. As I have tertiary G5 I am always nervous before each meeting and I have yet to go below 0.2.

My wife and I have decided that we will just get on with our lives, enjoy each day as we can and worry about the future as and when we have to. Having this site is just so great for me and even my wife's antipathy to it is waning now. Knowing you are not alone in how you feel and experience is so beneficial.

So enjoy the summer - when it comes !

Best wishes,

John

User

Posted 15 Jul 2016 at 07:47

High Leila
So sorry you down at the moment , but the results are looking pretty good and the psa may drop further yet. Even the essentially cured members of the site constantly worry about recurrence etc. Whatever a persons treatment , it's an awful Rollercoaster that you are thrown on as a couple , and then can't seem to get off. I too am G9 and by the time they operated already had spread to 5 lymphs and bladder neck. More worryingly my post op psa results were awful and still rising , indicating fully advanced PCa although it has not been visualised yet. My wife and I are both 49 with a six year old aswell as two other children , so it has been an unimaginable almost two years since diagnosis.
You are not being weak at all. Your body is releasing its stress. You both need to do that. We both went through quite a grieving period , but are now reaching an acceptance stage and different closeness despite me being rendered impotent by the op. It does get easier. It has to or you would stop functioning altogether. And you might be fully cured. Try to enjoy the " summer " and each other.
Chris

User

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.

********

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

User

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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