I'm interested in conversations about and I want to talk about
Know exactly what you want?
Show search

Notification

Error

My life with cancer

User
Posted 26 June 2016 13:21:27(UTC)

Hello friends,

I apologise that it's been a while since I visited the forum.  I'm afraid I have to many things to occupy my time with. Since we have our grand-daughter with us almost on a daily basis, it makes it difficult for me to use Mr. PC.  I'm also a member of a diabetes forum and I rarely go on there, but I do see all the emails.

 

Since my last posting, I've experienced fatigue on 3 occasions, the last one really dealt me a blow, I was house bound for about 5 days. Since then, I feel I've gone lazy, which I'm not proud of.  I really don't seem able to motivate myself to go out and walk - not that I can walk far in any case.

About 2 weeks ago I visited my GP. Because my speech impediment shows up, I gave my GP a letter, the day before I was to see him.  I was on 13 tablets, to do with my diabetes and my heart disease - I've felt for a while, I was on too many medications. I have been taking 2 tablets that were doing the same thing, and I thought why? Why do I need 2 tablets for blood pressure, 2 tablets for cholesterol and I was taking 3 tablets for something else, I can't remember!  2 of my meds had coughing as a side effect, and this was happening. The GP reviewed my meds.  We agreed to stop a couple altogether, replace any duplications with another tablet and let's see how I get on.  I believe my medication list will have been reduced to 11, still a lot in my opinion.

During the past month, I watched BBC documentary The Big C & Me.  It was emotional and interesting, but I watched it all.

 

Frank.

 

User
Posted 27 June 2016 09:15:12(UTC)

Hello friends,

thank you so much for your kind words of support. I really do appreciate it.

If I just in front of TV and mind my own business, I'm generally fine in myself. It's when I get to go outside and go for a walk, that on occasion I feel like I shouldn't have bothered.  To go to our village shop, I walk up a bit of an incline, which isn't too steep. Sometimes I feel like an old man going up the hill, and I feel that any traffic passing must think I'm drunk or something. I can be a bit self conscious sometimes.

I spoke to one of our nurses on here who asked me several questions. It turns out that I'm generally ok, so no need to panic over fatigue, as I only get it on an odd occasion. The last time was about a month ago.  As for the Maggie's centre, I can't visit the centre regularly as it's almost 70 miles away. However I'm getting good support from Barbara, who is my cancer support lady, who can also do home visits. She works for Pembrokeshire Cancer Support and they are a wonderful charity. So I do have local support, just a mobile phone call away.  Plus this forum and its members are wonderful.

 

 

Frank.

 

Thanked 4 times
User
Posted 27 June 2016 05:34:22(UTC)
Frank,

I'm really sorry that you've had a rough time of it recently. If this helps you, I too had a difficult time following RT trying to cope with the fatigue for a few months after it. I ended up speaking to the specialist nurses at PCUK and Mac. You also have other medical problems which I haven't had though.
I think in my case it was trying to return to a normal way of life including work and possibly my expectations were set too high for coping with it all. HT also plays its part too and was advised by the nurses that it was probably this which causes the most problems for patients in our position.

However some positive news, I now feel very much better and have more energy than I've had for a long time. So with guidance from your medical team I hope that you too will start to feel better. But it can take time, in my case about a year after RT finished. It's important to try to keep as active as possible, going out, seeing people and having a daily walk , even if it's short, will help you. Or try a new hobby or interest that you can do at home. Something to take your mind off your worries, in my case I started to learn to draw, it's really helped me.

Wishing you well,

John
Thanked 2 times
User
Posted 27 June 2016 20:12:09(UTC)

Hi Frank, sorry that you are feeling so low at the moment. It must be tough having more than one problem to live with and I am sure it would get me down as well. Try to stay positive and talk to as many people as you can, a problem shared is a problem halved. Keep talking to us on here as well.

Regards Chris/Woody

Life seems different upside down, take another viewpoint

Thanked 2 times
Show Most Thanked Posts
User
Posted 26 June 2016 20:35:09(UTC)

Oh Frank, I am so sad for you - the RT / HT combo really has hit you harder than most it seems. The hormones are well known for causing breathlessness as a side effect so this could also be contributing to your cough.

Have you been to the Maggie's Centre again recently? Perhaps they could offer you some help or advice with the fatigue. I wonder if it would help you or your wife to phone the nurses on here for a chat as well or instead? Brilliant idea to write to your GP before you saw him and i bet the Maggie's centre would also understand how much easier that is for you to cope with.

It is wonderful to spend time with small children, but also exhausting.

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


Thanked 1 time
User
Posted 27 June 2016 05:34:22(UTC)
Frank,

I'm really sorry that you've had a rough time of it recently. If this helps you, I too had a difficult time following RT trying to cope with the fatigue for a few months after it. I ended up speaking to the specialist nurses at PCUK and Mac. You also have other medical problems which I haven't had though.
I think in my case it was trying to return to a normal way of life including work and possibly my expectations were set too high for coping with it all. HT also plays its part too and was advised by the nurses that it was probably this which causes the most problems for patients in our position.

However some positive news, I now feel very much better and have more energy than I've had for a long time. So with guidance from your medical team I hope that you too will start to feel better. But it can take time, in my case about a year after RT finished. It's important to try to keep as active as possible, going out, seeing people and having a daily walk , even if it's short, will help you. Or try a new hobby or interest that you can do at home. Something to take your mind off your worries, in my case I started to learn to draw, it's really helped me.

Wishing you well,

John
Thanked 2 times
User
Posted 27 June 2016 08:16:57(UTC)

Hi Frank

You seem to be responding well to treatment which unfortuantly can come at a high price. I had a severe speech impedant until my early Teens so I've some idea of how frustrating (being polite there) it can be.

There comes a time in life when you have to put yourself first particularly when your health is an issue. So yes grandkids are a pleasure but also tiring. Thus perhaps some alone time is called for?

My first steps in getting over fatigue was to start of with small improvements and build on that success. There will be times when you seem to take 2 steps backward just accept that's life and move on.

Keep responding well to treatment.

Ray

Thanked 1 time
User
Posted 27 June 2016 09:15:12(UTC)

Hello friends,

thank you so much for your kind words of support. I really do appreciate it.

If I just in front of TV and mind my own business, I'm generally fine in myself. It's when I get to go outside and go for a walk, that on occasion I feel like I shouldn't have bothered.  To go to our village shop, I walk up a bit of an incline, which isn't too steep. Sometimes I feel like an old man going up the hill, and I feel that any traffic passing must think I'm drunk or something. I can be a bit self conscious sometimes.

I spoke to one of our nurses on here who asked me several questions. It turns out that I'm generally ok, so no need to panic over fatigue, as I only get it on an odd occasion. The last time was about a month ago.  As for the Maggie's centre, I can't visit the centre regularly as it's almost 70 miles away. However I'm getting good support from Barbara, who is my cancer support lady, who can also do home visits. She works for Pembrokeshire Cancer Support and they are a wonderful charity. So I do have local support, just a mobile phone call away.  Plus this forum and its members are wonderful.

 

 

Frank.

 

Thanked 4 times
User
Posted 27 June 2016 10:08:43(UTC)

 

I'm glad your GP sorted things out

... it's easy for them to add a tablet when there's a need, then let it go on forever, even when the original cause has settled down or resolved - well worth getting your medication reviewed every now and then!

Originally Posted by: Online Community Member
I have been taking 2 tablets that were doing the same thing, and I thought why? Why do I need 2 tablets for blood pressure, 2 tablets for cholesterol 

 

Sometimes there is a good reason - it's about side effects. 'Blood pressure tablets' all have side effects (including fatigue!), and increasing the dose can often make them unbearable, where they might have been unnoticed (or absent) on a small dose. So adding in a small dose of another type of anti-hypertensive (working in a slightly different way, with slightly different side effects) can often do the same job as doubling the dose, but without causing awful side effects. But again, should be reviewed regularly.

I'm surprised at two for cholesterol; hopefully one of them got stopped?

Cheers!

.

-- Andrew --

"I intend to live forever, or die trying" - Groucho Marx
Thanked 1 time
User
Posted 27 June 2016 20:12:09(UTC)

Hi Frank, sorry that you are feeling so low at the moment. It must be tough having more than one problem to live with and I am sure it would get me down as well. Try to stay positive and talk to as many people as you can, a problem shared is a problem halved. Keep talking to us on here as well.

Regards Chris/Woody

Life seems different upside down, take another viewpoint

Thanked 2 times
User
Posted 30 June 2016 15:21:57(UTC)

Hello friends,

I can give you a recent example of how I feel on occasion.  I was having a nap and the phone rings.  So I thought, ok let's go on Mr.PC and find out how the world is doing! :D  I put the pc on and suddenly felt cold - does anybody else with cancer suffer this?  I'm in my house wearing 3 layers and I'm perishing cold.  I even put my gloves on before going to sleep.  Then I remembered that 2 windows were open, so I went to close them.  1 was upstairs in our bedroom, and it didn't feel cold up there. Well, I could feel shortness of breath coming on, so I go downstairs and I slump into a chair, with my heart thumping!  So I stay there about minutes, waiting for my heart to slow down. Then I go to make some tea and I also put the heating on, which drives me nuts, cos it costs money, yeah?

I hope I can turn it off before my wife comes home, she's with my daughter.  So here I am, with tea by my side, listening to Eric Clapton's new album " I Still Do ", it's wonderful and relaxing. I just love music.  And in my own fashion, I still do, but in ' an old git ' sort of way.

I've read on other posts, of fellow members hearing people say " oh you're looking really well! " My immediate answer is " well everybody tells me that " and I leave it like that. On occasion I'll say I'm really tired, and they look at you as if I'm an idiot. Well, that's fine too, I don't particularly care what they may think.  It could be they don't know what else to say. How are you feeling, would be nice. I may have just turned 59, but in my self I feel years older. And I've felt like this for many years, even before my heart disease and cancer diagnosis.

I'm still waiting for the real summer folks, and a nice warm breeze. If I step outside my door, I feel a cool blast of air!  So you can guess I haven't been for a walk today.  Maybe my wife will make me suffer later; in that case I'm putting a coat on!

 

Frank - still attempting to live with cancer!

 

Thanked 1 time
User
Posted 30 June 2016 15:58:36(UTC)

You're not attempting it Frank - you're doing it !

Slowly maybe. But you are !!

I'm sure your wife and family are glad of it anyway (your attempt to live with cancer that is) not the fact that they have to have the heating on at the end of June!!

People asking how you are don't really expect any other answer than "I'm fine".

I've said that myself when I've walked into the doctor's surgery and then sit there like an idiot thinking "Why did I say that, he'll wonder why I'm here!"

Persevere Frank. Perhaps Nikon Steve would have a few tips for you if it is your heart fatiguing you as well?

We can't control the winds - but we can adjust our sails
Thanked 1 time
User
Posted 30 June 2016 16:09:01(UTC)
I think you are voicing what many of us feel; some more than others, some more often than others, of course.

I think it's a case of 'muddling through'; accepting that most people just don't understand - however well meaning they usually are, and when things get really bad, popping round to see if the GP has any bright ideas.

"Endeavour to persevere", as they say in the best Clint Eastwood films!
.

-- Andrew --

"I intend to live forever, or die trying" - Groucho Marx
Thanked 1 time
User
Posted 30 June 2016 16:24:20(UTC)
From one 59 year old to another - yes, I'll admit we had the heating on for an hour yesterday. And I don't care what anyone says, it was a miserable day and the house felt cold. I had my sife's approval too!
But with HT I can feel not only really hot one minute but incredibly cold the next, but I cope, and trust that one day I'll be free from the flushes ( hot or cold).

It can be difficult when people say you look well, when in fact you feel anything but - in my case I felt " wrecked inside " for a few months after RT. However I'm sure that most people sometimes do not know what to say and are trying to be positive for you. Now 18 months after RT, I no longer have people really commenting on my situation but should they ask I just say " I'm doing ok, thanks for asking - but I'm still receiving treatment" or something similar.

You'll get there Frank, it takes time, it's not always easy but you know that others have been in a similar position and have got through it.

Keep going,

John
Thanked 1 time
User
Posted 30 June 2016 16:39:09(UTC)

Thank you for your replies, I really do appreciate them.

Over the weekend, I printed an article, from the dreaded 'net! It's titled " Stage 3 ( C ) Prostate Cancer "  So it is an American article, as I have prostate cancer stage 3b - there isn't a stage 3c in Blighty, as far as I can see.  I haven't had the time to read it yet, with grandchildren running around!  However I looked at other links, to do with my condition.  It seems that my future could be a positive one.  I may well survive my cancer treatment by 5, 10 or 15 years, which I thought could be reasonable, meaning I could possibly reach the age of 74, which ain't bad. My father lived to see his 77th birthday.

I asked my wife about her thoughts on the matter - she replied " I want to see you live for another 20 years! ". Ok, nothing wrong with that, it's a reasonable expectation. I'll see what my Lord Jesus can do, in helping me with this.

 

Frank.

 

Thanked 1 time
User
Posted 30 June 2016 16:46:49(UTC)

From one 67 year old (next week) to a 59 year old I have to admit we had the fire on for a few hours yesterday as well , so you are not alone Frank and like John I have the hot flushes then cold flushes and feeling really tired, also very tearful. It seems to be par for the course and it is just how bad it is and how you handle it.

If you can try to accept that whatever happens it is because your treatment has side effects and there is not much you can do about that. Being aware and also accepting of it is half the battle and if it means sitting at home with jumpers and fleeces then do it, just be ready to take them off again. Also if you feel tired and need to rest then do so.

You seem to be ok with people,mentioning your PCa but I agree it is annoying when people do not actually ask how you are but you will find that it is the same no matter what illness you have.

Stay positive and do the right thing and remember you are still alive and life is for living.

Stay well, Chris/Woody

Life seems different upside down, take another viewpoint

Thanked 1 time
User
Posted 30 June 2016 17:46:04(UTC)
Anyone else prepared to admit having the heating on at the end of June? But we do have PCa , so in my mind we can do whatever we like!
Thanked 2 times
User
Posted 30 June 2016 18:06:57(UTC)
Chris,

Your inbox is full again. Keep reminding you ....
How can I send you a virtual birthday card - need to know the date , mate .

J
Thanked 1 time
User
Posted 03 July 2016 16:18:46(UTC)

Hello Friends,

this past week, with the rain and wind, I've been feeling rather cold!  Indoors and outdoors.  I've even had the heating on sometimes.  And when I've lied down on my recliner, I've even got a woolly blanket over my legs ( my feet get cold ) and put gloves on my hands! I feel like a right git!  My car thermometer may say 13-14c, but with the wind added to my discomfort, I'm perishing cold.

My wife and I, took our grand-daughter to Newgale beach 2 miles away. The sunshine was nice, but I didn't like the strength and temperature of the wind. I persevered for an hour, and just amused myself by doing little short walks along the beach. I couldn't go far, as I'm looking after our kit in 2 bags, Ella-Rose wanted to go and see the water's edge!  It was ok, there weren't many people around.

 

I managed to prepare our Sunday lunch, which made me feel good. While my wife took a car load of rubbish and unwanted items to our local dump. That didn't make me feel so good, as normally that would have been my job.  At present my wife will not let me cut our grass, which is only a small patch.  She cut the grass last night, while I made the mistake of watching Germany making fools of the Italian team!  Still, it ain't bad, Wales are still there - can they do us proud?  I live in Pembrokeshire by the way.

 

Frank.

 

User
Posted 03 July 2016 17:26:47(UTC)

Hello friends,

I've just been reading a few other posts, which I found very sobering. In my experience, I believe I have been extremely lucky with how my life has been since I finished RT nearly 4 months ago.  My faith in Jesus has a lot to do with my outlook on life in general.  Of course I can't say I've had it easy. How is cancer ever easy?  Although I've tried to remain positive during my current situation, my local hospital messed up, regarding investigating my suspected cancer.  Some dimwit marked my GP's letter as routine! Well, I might be routine, but for a long time after diagnosis, I was very worried about my condition. Of course I put a letter of complain, which is still ongoing!!!

Also my sense of humour keeps me going, so that's good.

 

Frank.

 

User
Posted 05 August 2016 16:48:49(UTC)

Hello Friends,

I've been busy for last couple weeks - or rather my wife has ( of course! ).  We have our grandson staying with us, however we are going to his home home at Newport Gwent, Luca wants to see his parents.  The benefit is we shall stay the night with them, before returning Sunday afternoon. I'm not sure if Luca is staying home, or returning with us! At least Sandra and I can share the driving. It seems I can't do long distance driving, for the time being. Does anyone else experience this?

For the past week, I have been feeling tired a lot, like a mild fatigue.  When I've gone out for my short walk, I've come home and I just can't feel the benefit of it.  On Tuesday, we took the kids to a local Dinosaur Park.  I made the mistake of joining my family on the Dinosaur Trail, which I believe is only about half a mile round. But at about the half way mark and after a steep climb, I had to stop for 5 minutes and use my angina spray! I was a bit worried, but did recover.

Tonight, we go to our local pub down the road, to meet up with a group of postal workers, to raise money for our ex postman, Andrew, who has a form of blood cancer. In his case he is terminally ill, which is very sad, as he is 7 years younger than I am. I haven't seen him for over a year, he won't have home visits, which is fine.  This will be my first night out, since I finished radiotherapy 5 months ago.  The pub does a curry & pint every Friday night, so I'm looking forward to it.

 

 

Frank.

User
Posted 09 August 2016 19:44:05(UTC)

Hello friends,

I'm still here.  Busy with our 2 grandchildren. We went to a local zoo near Tenby and were there for about 4 hours.

It's a lovely sunshiny day, with a light cool breeze. I didn't follow my family everywhere, I decided to stop and sit down at several places, and simply enjoy the fresh air!

I'll be looking forward to my 2nd checkup on 8th September. I'm feeling quietly confident that I won't be having any surprises. I still feel weak at times and get very tired.  My arms have no strength in them at all. So sometimes I feel quite useless.

 

I'm not concerned at all about my diabetes, as I'm in a good place ( so far ). But I believe my heart disease complicates matters, on occasion, how I feel is probably due to a combination of my heart and PCa.  I'll have to ask the urologist when I see them.

 

Frank.

User
Posted 09 August 2016 19:57:44(UTC)

Evening Frank.

Well given all your other problems I'm glad that you continue to enjoy life and the family.

Young grandchildren are lovely.

Ours are lovely too you understand but 20, 15, 20 and 18 next week means a lot of my fun has gone.

Not theirs though since I apparently (and unwittingly) cause a lot of their laughter. Glad I'm good for something anyway

****

We can't control the winds - but we can adjust our sails
Thanked 1 time
User
Posted 10 August 2016 16:34:22(UTC)

Hello Sandra,

how are you and John doing?  Yes grandchildren are a blessing, but why are you missing out on the fun?  Try comparing notes between yourselves - bore them with how our generation had to entertain ourselves! I think young people today are boring, with their noses stuck to their phones! In my case, I was mainly stuck behind the till in my parents shop!

Another good way would be to educate them on the brilliance of music from the 50s, 60s and 70s.  In my opinion, music changed from the 80s. It all ain't bad of course.  I came across a brilliant oldies internet station, I think it's  www.2ngradio.com  try it!

 

Frank.

User
Posted 10 August 2016 17:12:15(UTC)

We're fine thanks Frank. Well, John has had some skin problems lately, unconnected to the Prostate cancer treatment.

The oldest is into vinyl and old CDs and he talks our ears off about things. He has a few problems of his own and really loves to visit but usually he is away at uni. The net two weeks will be interesting though as at 20 his parents decided that he stands on his own feet holiday wise. They are helping him through Uni so it is already costing them a lost of money. He doesn't seem bothered by being on his own - he is a bit of a loner anyway.

My only granddaughter used to come every week and we would do so much together but at 15 she seems unwilling to even be seen in the street with us!! Two OAPs with no street cred.

Our other two boys at nearly 18 and nearly 20 are great fun and we always have a good laugh but we do not see them very often and even though they are always on the phones none of the four would think to ring us to chat. The way of the world I suppose.

Keep well

Sandra

********

We can't control the winds - but we can adjust our sails
User
Posted 15 August 2016 16:20:12(UTC)

Hello friends,

today I'm feeling quite positive for a change, of course the lovely weather helps! My sister suggested yesterday, that we walk around the village, I said ok.

So off we go 10.30 this morning, my sister wearing her fitbit pedometer thingy.  I decided to go out without a jacket on, although I still wore 3 layers of clothing, so I was alright. This is my longest walk around our village since I finished radiotherapy, so I wondered how I would get on. It turned out I did ok.  The fitbit informed us we did over 4800 steps, so I was quite pleased with that.

We had lunch when we got home, and as is my usual routine, I lay on sofa for about 90 minutes sleep. I felt better after that.

Later this week, possibly tomorrow, we'll visit the Pembrokeshire County Show.  I've prepared for my visit, having bought a folding chair and a pair of hiking sticks.  If Teresa May can enjoy them - so shall I!  I haven't been to the show for several years, so I hope to enjoy myself, even while sitting in my chair, looking like a stupid old git!!

 

Frank.

User
Posted 15 August 2016 18:38:12(UTC)

Have a good time Frank.

It doesn't matter if you look like a stupid old git. Just enjoy yourselves. I would assume, seeing somebody using the walking poles, that they needed them so nothing stupid there, just common sense.

Hope the sun shines for you

*******

We can't control the winds - but we can adjust our sails
Thanked 1 time
User
Posted 15 August 2016 18:58:11(UTC)
Hi Frank
Lovely to share your happiness at having enjoyed your walk round the village which has spurred you on to further adventures. I hope that you go and enjoy the Show using walking poles, the chair and anything else you need for you to make the most of the day. You soon realise that everyone else is there to enjoy the Show and will also be using chairs,walking sticks and a variety of hats. We have earned the right to be old gits so enjoy it. Have a lovely day 🐐🐃🐄
Kevan
Thanked 1 time
User
Posted 17 August 2016 17:38:13(UTC)

Hello Joshan, hello Kevan,

well it was a beautiful sunny day, at the show yesterday.  I brought my fold up chair, but decided to leave the sticks at home - less cargo.  It was also rather warm, so I left my jumper at home, but brought my jacket along,  and I used it on occasion.  There were thousands of people in attendance which was nice to see. Our 2 grandchildren also enjoyed themselves, they loved the animals!

I had a chat with 3 cancer charities who had stands there, they were very helpful and friendly.  Finding porta-loos was easy, as they were well supplied, so I didn't suffer.  In total I think we were at the show for 4 and a half hours, which was probably too long, although I did enjoy myself, even if my legs and feet were aching. We returned to my daughter's house where I lay on the recliner for 3 or 4 hours! I recovered a bit. My wife and I got home around 8.30pm - long day.

This morning, I woke up feeling rather well. I did plan to go for a short walk today, but haven't done so as yet.  After lunch, I went to lie on the bed for a sleep. As I went upstairs, I felt that my body was feeling very weak as were my legs.  I thought " what's this? ".  It turned out I slept for just over 2 hours, and felt better for it.  My wife of course wishes for me to do more walking. Last night I googled Prostate cancer and walking. Of course it advised to go out and walk!  Friends, it is my intention to do so, but sometimes ( perhaps too often ) my motivation is very low.  Having said, on Monday I loved my village walk and yesterday I enjoyed the county show. I ought to make more of an effort to increase my walking - it is for my own benefit, at the end of the day.

 

Frank.

 

Thanked 1 time
User
Posted 17 August 2016 18:02:48(UTC)

Glad you had a fun day Frank.

Does your village have a pub? What an incentive to get walking.

Even if it's not far it's motivation and a nice glass of lemonade at the end of it.

We find that we achieve more if we have a target. I can't always walk far so we have to take into account flat surfaces and toilets but we do better with a planned walk than randomly deciding whether we should even go out.

*****

We can't control the winds - but we can adjust our sails
Thanked 1 time
User
Posted 17 August 2016 18:11:28(UTC)

This morning, I phoned my surgery to make 2 appointments. One for my 2nd PSA blood test, following radiotherapy, and another appointment for my latest Prostap HT injection. I'm not sure how many I've had now.  At present I'm feeling rather relaxed about my upcoming follow up appointment. Not sure what questions I need to ask the urologist, I simply haven't thought about it yet.  My first follow up I was told my PSA was below 0.1, which I assume is good.

I'm not trying to sound flippant, as my initial PSA score when diagnosed was 0.9, which again I believe isn't bad, yet my prostate was almost full of pca! In my opinion, I believe that my medical team looked at my psa level and thought I was fine. Yet after my biopsies, they knew that 15 out of 16 samples contained cancer. Like most of us on this wonderful forum, I went through a low point, while trying to make sense of what had happened to me, and what did I have to look forward to, in facing the future. Because of my strong Christian faith, I never suffered with any depression. Though I do have some low days.  Today isn't 1 of them, despite what I'm writing here. All I know, is that from the time that my GP first wrote to the urologist to see me, until I began radiotherapy treatment, 13 months had passed, which I felt was a long time. From the time my GP sent the letter, until the time I actually saw the urologist, 4 months had passed!  During all this time, I was home here wondering what the hell the cancer was doing to me.  It turned out that the HT was doing it's job, and the cancer was just " leaking " into the seminal vesicles.  I'm assuming that doesn't mean it had spread. My MRI scan showed the cancer hadn't reached the lymph nodes. The cancer was contained within the prostate. I suppose I'm very fortunate, and I'm grateful.

I have been reading other threads around the forum this past 2 weeks. I've also read some profiles as well. I'm totally blown away by the details you've put on your profiles. You'll notice I haven't managed to update mine as yet, but I intend to do so, b ear with me. I'll have to dig out my files.  One of my urology files I bought from my local hospital last year, was simply strung together in no orderly fashion whatsoever. 1 day I'll have to dismantle it and put it back into chronological order - it ain't at present. I'm glad I got hold of it, as my wife and I came across 2 or 3 very bad errors.  One urologist couldn't even get my date of birth right.  One major error, was that I was supposed to have had chronic kidney disease.  I most definitely did NOT!!  But my father did, so I'm assuming that got mixed up.

Sorry for my long post, it wasn't planned.  I need a break after all this.  Let's see some nonsense on facebook!

 

 

Frank.

User
Posted 17 August 2016 18:16:12(UTC)

Hello Johsan,

yes we have a small pub, just down the road.  I walk past it most days on my short walks.  It's currently undergoing some building works, it will have 4 rooms for B & B, it is supposed to be installing a micro-brewery, and the kitchen is being enlarged - yet the pub's interior is still rather compact.

Maybe a half pint of Guinness will do the job!

 

Frank.

User
Posted 30 August 2016 18:32:35(UTC)

Hello friends,

I had a down day yesterday, as I was informed that a dear friend has lost his battle from cancer, having passed away Sunday evening. He was only 52 years old!

 

Tomorrow I go to have a PSA blood test. Then next Wednesday, my wife and I go to our local hospital for the result. I'm not expecting any dramas, but the waiting game isn't funny.

My other health issue is my heart disease. On Friday I go to see a cardiac nurse at our local leisure centre, to be assessed for joining their rehabilitation programme.

 

Went on Google to find out how to clean a urinal bottle - such fun!  Some people advise using steradent tablets, or vinegar or even hot water with washing up liquid.  One woman suggested putting it in the dishwasher every couple days!  What??  I'd expect such a comment from an idiot bloke! NOT from a woman in her 50s!!!

Apart from that, life is wonderful - as they say!

 

 

Frank.

User
Posted 30 August 2016 20:39:04(UTC)

Sorry you had a down day yesterday Frank, they happen to us all at some point don't they.

You have a lot on your plate at the moment. I bet Steve can relate to how you feel, what with the cancer and then your heart problems too.

Good luck with the PSA tomorrow anyway.

Cleaning a urinal? I'm not sure about the dishwasher (I don't have one) but for sterilising one a babies bottle cleaning tablet would do it, or bleach since you won't be drinking out of it!!

The baby sterilising tablets are good enough to sterilise and clean my wine making demi johns so should work for a urinal bottle. Is the bottle glass?

******

We can't control the winds - but we can adjust our sails
Thanked 1 time
User
Posted 31 August 2016 16:50:56(UTC)

Hello Sandra,

no it's not glass, it's plastic, but does the job.

The sterilising tablet sounds good. I'll see how cheap they are at savers!

What gets me is, when I'm feeling horrible within my body, could it be my heart disease as well as my other side effects?  Or possibly a combination of everything. Don't get me wrong, I don't feel down all the time.  The worst thing about my condition is being tired quite a lot of the time, and on occasion, the need to sleep, which winds my wife up. But I can't help it!

 

Frank.

User
Posted 06 September 2016 13:56:32(UTC)

Hello friends,

                    tomorrow morning at 9.40am, I see the specialist at our local hospital just 7 miles away, for the result of my 2nd PSA blood test.

I'm feeling comfortable about it, not worried in any way, just curious to find out where I'm at, with my Pca.  As usual, to day I'm feeling quite tired, I may have a nap, while my wife is out!  I've done a couple jobs of house work, so my wife doesn't have to do everything. I can prepare meals and wash the dishes, simple stuff like that.  I can also do the hoovering, though not all at once, we have a 3 storey house;  I can't wait to sell this house, so we can down-size, to a 3 bed bungalow.

Last Friday afternoon, I registered at our local leisure centre, to join the heart rehabilitation course, run by the British Heart Foundation. I'm looking forward to it, hoping it will kick start some motivation within me, to get out more - and just move!

 

 

Frank.

User
Posted 07 September 2016 00:32:13(UTC)

Hi Frank,

Good Luck for your appointment and PSA results (later today).  Hope they're good.

I think you'll enjoy the exercise classes, I've done two Cardiac Rehab Courses and one Macmillan Wellbeing Course.  I enjoyed them.

Take care.

Steve

Thanked 1 time
User
Posted 07 September 2016 06:53:10(UTC)
F

Best of luck for today hope all goes well.

Thanks Chris.
Thanked 1 time
User
Posted 07 September 2016 17:01:24(UTC)

Hello friends,

my appointment with the urologist went very well.  Apparently my PSA blood test result was the same as the one 3 months ago. My PSA level is below 0.1.  So I'm pleased with that.  However, I still feel absolutely shattered.  I've just come back from my 3rd walk today. It's strange, I don't seem to feel any benefit from it.  But then, I don't go out on a regular basis.

So I'll have to keep plodding on, the best as I can.

 

Frank.

 

 

User
Posted 07 September 2016 18:02:35(UTC)

Great News, Frank!

Long may it continue.

"I think the more exercise you take, the easier it will become" - even thought it's not happening for me yet.

Steve

Thanked 1 time
User
Posted 07 September 2016 18:10:42(UTC)
Great result Frank,

Regarding the walking perhaps it's better to only go once a day, building up the distance little by little?

Arthur
Thanked 1 time
User
Posted 22 October 2016 16:28:32(UTC)

Hello Friends,

I haven't been here for a while, my time is taken up with family. It'll be busier from tomorrow, as our grandson visits us for the half-term.

Today I've been feeling down - not depressed, just miserable.  This morning with my wife, I walked up to the shop to get our weekend papers. To get there, we climb a bit of a hill, which I don't think is too steep. It's only about quarter of a mile, yet I had to make 2 short stops, to catch my breath. I'm not happy with this but it happens. Returning home was easier, but I still feel like an old git, walking along.

For the last 5 weeks, I've joined a heart rehabilitation course at the local gym, but I've missed the past 2 weeks due to a cold and chest infection.  I went there yesterday, and the dude in charge, really pushed me, even though I said at the beginning of class, I wasn't feeling up to it! This could explain why I'm not feeling like my usual self.

I recently joined a group on  facebook called wallk 500 miles, walk 1000 miles!  According to my calculator, if I were to walk 3 miles a days, I could reach 1000 miles, the problem is, I don't walk every day. But it is something to look forward to, regarding my health.

 

Another thing that bothers me is, 7 months after completing radiotherapy, I'm still feeling the same as I did just before treatment. Am I being too hard on myself?

 

Frank.

 

User
Posted 23 November 2016 16:43:25(UTC)

Hello Friends,

I'm still around, and still trying to make sense of my living with cancer.

Still I feel tired and some afternoons, I shall sleep, though my wife thinks I'm lazy. I'm not lazy, I'm simply worn out.

 

Now that winter is here, I am perishing cold.  On occasion, I wear my gloves when I'm in the house, I cover my legs with a blanket while watching TV!  Sometimes I wear gloves when I go bed, I'm not joking!

 

Although I love Christmas time, I'm looking forward to late spring!

 

Frank.

User
Posted 23 November 2016 17:03:39(UTC)

Yes Frank I think you are being hard on yourself. Your body is protesting about all the nasty stuff done to it and don't forget we all heal at a different rate.

It's hard for our other halves to understand sometimes just how we feel but I'm sure yours doesn't really think you're lazy!.

As for the cold. Well, I've not had prostate cancer but the minute the current weather hits I want to hibernate.

I have been known to sit and watch TV wearing gloves, I already wear thermal socks and both John and I snuggle under our slankets to watch the box!!!!

We can't control the winds - but we can adjust our sails
Thanked 1 time
User
Posted 23 November 2016 17:55:55(UTC)
F

I am currently attending a weekly class at a Maggie's centre, the first weeks subject was fatigue. If you have a Maggie's near you might be worth a call or visit or there is a Maggie's on line service. The main points raised were no caffeine in the evening to aid a good night's sleep and set yourself realistic targets of activity and correct breathing to get you to sleep.

Fortunately I do not suffer with fatigue but the omitting the evening caffeine and doing the breathing exercises has resulted in a full night's sleep for the first time in a while.

Thanks Chris
Thanked 1 time
User
Posted 16 January 2017 17:31:33(UTC)

Hello friends,

haven't been here for ages - my apologies.  Spending too much time on facebook methinks.  But I've had a lot of appointments this winter, I still have a few in next 2 weeks. So far I only have 1 appointment in February.

 

I had my 3rd PSA check up last Wednesday, and the result was very good. Exactly the same as my 2 previous check ups.  My PSA level is below 0.1. So I'm happy with that. My next check up is 4 months time. However the urologist wants to see me within a month, to check how my liquid intake and urine output are doing, as I'm still visiting the loo quite often, about 18 times including night time.

 

This afternoon, my diabetic nurse phoned me with the result of my diabetes check up last week. It wasn't good.  I've had 4 good years of good control, but apparently, over past 3 months I've probably enjoyed the wrong foods too much, plus Christmas. So that was a slap in the face!

 

Anyways, I believe I'm putting a right decision, into practice, which should improve my overall health.  On facebook, I've joined a group called 

#walk1000miles.  So I intend to go and take a walk, as often as I'm able to, around our village. At present I can only manage to walk about a mile.  I've got a pedometer and all the gear and 2 hiking poles, so off I go.  I can't manage going out every day just yet.  When weather improves, I'll try to do more.

 

Frank.

User
Posted 16 January 2017 18:53:35(UTC)

Good luck with the walking Frank.

A lot of people eat the "wrong" things over special periods like Christmas and New Year. Obviously if you are diabetic then there is more to go wrong for you.

You know what probably caused your hiccup and I'm sure you'll soon be back on track.

We can't control the winds - but we can adjust our sails
Thanked 1 time
User
Posted 16 January 2017 19:32:46(UTC)

Thank you Johsan,

yes I do know what went wrong - me!  I'm the one who doesn't want to end up like my dad. He died 4 years ago from diabetic complications and heart problems. I've also got heart disease, so I ought to know better.  So I really have to stop buying and eating junk food.

I'm hoping that my attempting to make a go of my new walking regime, I'll hopefully get back to where I was. Of course, having cancer set me off on a tangent, so I ignored diabetes and ate whatever I fancied, but I've got no excuse.

 

Frank.

 

User
Posted 16 January 2017 19:50:37(UTC)

If the diabetes is poorly controlled that may be contributing to the number of loo visits you are making!

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


Thanked 1 time
User
Posted 17 January 2017 09:27:47(UTC)

Hello Lyn,

as ever, you are full of wisdom!

I admit, that for the past 2 years, I did ignore my diabetes, which I know is wrong.  Now, it's caught up with me - so I'd better take care. I'm going to investigate the low-carb diet, whether my GP likes it or not!

 

Frank.

 

User
Posted 17 April 2017 11:05:05(UTC)

Hello friends, 

once again, I've been awol from our forum, not on purpose.  Stuff in life and my family get in the way.

I had my recent diabetes review 3 weeks ago, and somehow the results were amazing! My cholesterol down from 6.1 to 3.9 - wow! and other results had improved. I can imagine it's the new walking regime I've taken up. Yet, in the first 3 months of this year, I've missed about 50 days of walking; either through illness or the damn freezing cold weather.

During the past winter, I've experienced 4 viruses, including 2 chest infections! I went to my first prostate cancer meeting at Fishguard last week. Someone mentioned immunotherapy. Would this be worth looking into, and who do I go and see to enquire about it? I feel my immune system is crap - so I'm hoping the walking will eventually help me to regain some fitness. At present, I'm unable to walk further than 2 miles in one go. Also I can't do steep hills, although with my walking poles, I can go up slight inclines.

 

Frank.

 

User
Posted 03 May 2017 18:11:41(UTC)

Hello Friends,

                     went for my 4th cancer check-up this morning, and I was pleasantly surprised to be told, for the 4th time, my PSA is below 0.1!

Also my next check-up will be 6 months time in November!

I'm on 2 water tablets to help me control my bladder, and they are slowly taking effect. I explained to the urologist, that I still get very tired, and he replied, that I would do, that I'm still recovering from my radiotherapy. I also told him, that since January of this year, I've taking up walking, so he was pleased with that, and he thinks I'm doing well. I just wish I could be doing better. So far, I can't do much more than 2 miles walking in 1 go.

 

I went to see my diabetic nurse yesterday, who quietly laid into me, saying I could be doing better with my diabetes. After my check-up in March, after talking to my GP, I felt like I was on cloud nine, as my results were better than Christmas time. But my nurse witch, made me feel like she dumped a wet rag on my head! She ain't NO Wiz!

I told her that because of my heart disease and cancer journey, I am finding life difficult - she ignored all that!  I explained I've been walking since January, it seemed she didn't hear me properly, and seemed a bit sarcastic. I insisted to her that I am going to keep on walking and I'm hoping to fight my diabetes in this manner. She asked if GP had mentioned an injection, to replace 1 of my meds, I said no, I don't want it! I'm currently on 13 different tablets, that cover my 3 health conditions, plus I'm on Prostrap, my next injection in about 2 weeks.

During my cancer journey, my life hasn't been enjoyable. What I mean, is that I'm regularly tired, sometimes I get fatigue, also I suffer with feeling cold. Even now, I still go out with 3 or 4 layers, and on occasion I wear a small thin of gloves. My wife and I were on the beach last night, and the wind, in my mind, was perishing cold!

 

Does anyone else experience the same nonsense as I am?  And how long must I put up with this crap?  I'm no macho man, never will be and never have been. I've got no upper body strength since being diagnosed. Perhaps I'm being a little impatient?

 

Frank.

Thanked 1 time
User
Posted 04 August 2017 20:23:36(UTC)

Hello friends,

I'm still around, and still muddling through my experience of life, following radiotherapy treatment.

During the month of July, I have had diarrhoea on about 5 different days. One afternoon, I had diarrhoea 6 times!  One day last week, I happened to be home all day, and my bowel movements for that day, were 6!  What on earth is going on I simply don't know. It has to be the result of radiotherapy. One afternoon, I was embarrassed, while meeting a friend for coffee and cake, I went to the loo, and had diarrhoea 3 times! After 15 minutes, I re-joined my friend, who asked if I was ok, I must have been white like a sheet. He asked if I needed to go home, I said no.  That was the first time, I had diarrhoea away from home.

Went to my GP and she referred me to hospital.  I saw the consultant yesterday, so I'll be having a colonoscopy in 4 to 6 weeks time. Joy!

 

Another thing that's bothering me is, what exactly an oncologist for?  What I mean is, just because I completed my radiotherapy treatment, does that now mean, that I've been wiped off her radar? Before I saw my GP, I rang my oncologist's secretary for advice on what I do about my current problem. Secretary rang me back, to say, I was no longer under the oncologist's care. I thought thanks a lot!

 

Do other members here have difficulty finding follow-up care?  I pray that after my colonoscopy, no further sign of cancer is discovered.

 

Frank,  feeling bewildered, and at present, not at all amused.

 
©2018 Prostate Cancer UK