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Today is the First Day of the Rest of my Life

User
Posted 11 Feb 2015 at 07:13
Hi Steve, well done you just for going, some wouldn't bother. The fact that it also gives you another set of eyes to check you out between official appointments must be good too. On an earlier matter, I have gone virtual dairy free as I have read lots ( although not the publication mentioned) about how it's not good for PC however one has to watch calcium as dairy is where most of us get it and we all need strong bones. Keep at it mate, Kev

Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019

User
Posted 11 Feb 2015 at 08:45

Morning Steve.
Well you're keen to get well, you're doing all you physically can to get well so now it is in the hands of the experts.
At least with a 24 hr monitor it should show up where the problem is.

Keep going my friend, keep strong.

We can't control the winds - but we can adjust our sails
User
Posted 11 Feb 2015 at 09:07

If your health issues in the last few months had been a novel, I reckon most would think that could never happen.

Top endurance athletes often have low heart rates. Is it possible your HR has often been on the low side? Clutching at straws maybe, but you sound as though you've been a fit guy in the past.

Hope this latest episode gets sorted quickly.

Paul

Stay Calm And Carry On.
User
Posted 11 Feb 2015 at 10:27
Hi Steve

Sorry you are still going through hard times but keep the faith and you will get there. As regards the personal pressure monitor giving false readings it may be an idea to take it with you at the next appointment and ask them to compare it with their equipment, so you know you are comparing like for like.

All the best

Roy

User
Posted 11 Feb 2015 at 14:59
Steve, first off thanks for the photos they are great,

I am sure your sesions under medical supervision are the best way for you to get back to a stronger fitter you, the normal heart rate can vary a lot dependent on age,sex and fitness. Roy is also totally correct athletes and very fit people often have a much lower resting heart rate.

When I was 25 and playing hockey twice a week with circuit and fitness training 4 nights a week my resting heart rate was about 70. Nowadays it is around 90. I think your medical team will be more interested in your recovery rate after exercise, if your HR is droppping and you are still getting breathless they are right to investigate further.

Try not to get too despondent you are having a really crap time of it just now, does your heart CNS know all that is going on in your life that may be making things harder for you?

Thinking of you

xx

Mo

User
Posted 11 Feb 2015 at 18:33
Eight months today when my life changed forever: Diagnosed Wednesday 11th. June. I lost so much that day that I will never get back. I can't explain why I should suddenly feel this way today. I feel sad but I know I shouldn't, I'm supposed to be positive.

I'm tired.

Edited by member 11 Feb 2015 at 18:35  | Reason: Not specified

User
Posted 11 Feb 2015 at 19:32

Originally Posted by: Online Community Member
Eight months today when my life changed forever: Diagnosed Wednesday 11th. June. I lost so much that day that I will never get back. I can't explain why I should suddenly feel this way today. I feel sad but I know I shouldn't, I'm supposed to be positive.

I'm tired.

You can feel both emotions Steve, it is allowed.  Hang on, "Positively sad"?  NO, that is not what I meant.  I doubt that anyone looking back to their "D" date, their diagnosis date, looks back with any degree of fondness or joy?  Maybe some, at the time misplaced, relief if they were told "Ah your lucky, it is only prostate cancer, that's a good one to get"?  How many time have I heard that said, and even said it myself when telling people about my condition?  The fact is that for all of use love changed, life expectancies changed, hopes and dreams were replaced by fears and anxieties that we never even knew existed. 

But, we do have a choice in what emotion takes precedence in our lives and thoughts, although that choice may take longer to be made depending on what stage you are at in your "journey" or nightmare?

Having posed for you, and having been rearranged by you, you are a quite bossy reggub when you heft that Nikon body up you know, I feel free to advise, feel sad but feel glad that you are still here, and although you have had a plethora of issues recently you are still being given treatments to deal with them.  

Things could be worse?  I know that is little comfort, but no matter how much tihs has hit your fan recently there could be more, so hang on in there and keep believing, keep fighting and keep snapping.

atb

dave

shall I pout a bit, or look like this, lick my lips or stick my butt out?

User
Posted 12 Feb 2015 at 04:04
Thanks Dave.
User
Posted 12 Feb 2015 at 06:46
Hi Steve, sorry that the memory clearly has kept you awake but look on the bright side if we were both not in this club we never would have known each other, lol .

For me the actual date of results rather than my initial PSA is the date I remember as everyone kept telling me how curable PC was in between and although I had my fears it was unknown, I still can picture a certain consultants smiling face ( who I never saw again) telling me how imminently cureable my condition was after just the PSA and a sweep unlike the next one 3 weeks later who had no smile and nothing good to say. So my date is 6/11/2014, a double sad day as one of my good clients died of cancer that day.

So as has been posted above, you have every right to have whatever emotion you have, knowing you Steve briefly as I do ( so far) you will have a lighter emotion soon if not already, you have lots of " friends" here rooting for you.

Today is a good day, Kev

Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019

User
Posted 12 Feb 2015 at 12:10

We're all human and being 'UP' all the time isn't achievable. When I feel down I play my guitar and sing Beatles songs and I soon feel better.

 

Here comes the sun, do do do do

Here comes the sun and I say

It's all right  

User
Posted 12 Feb 2015 at 17:27

Good evening Steve

We all feel like this on some days. My OH is quite 'down' at the moment too and it does affect the whole family as he has no patience with the children and does not want to do anything except sit down/snooze all day which is frustrating for me as I have so much to do.... (although I do not mean to feel this way).

I end up trying to focus on being thankful that we were diagnosed - afterall we could have carried on in blissful ignorance of this disease which eventually would catch up with us and possibly present with a far worse diagnosis.

From what I recall you are still in the 'cure' camp, keep reminding yourself of this, as it is something to be really thankful for and gives you hope.

Best of luck sorting out the heart problems too - not easy but you will get through it as you are getting one to one treatment.

We have had lots of other medical problems too like pain in shoulder, swollen ankles, tinnitus, hearing loss etc which have meant loads of additional tests and worry that it is somehow connected. It seems like we can (sort of) cope with fighting one problem/illness but when other issues are brought in to the mix too, it becomes really difficult to cope as we don't know what to worry about next. It seems like this is how you are feeling too at the moment and hopefully once this heart problem is sorted you can get back to the job in hand of fighting this damn PCa.

Stay strong...

Alison x

Edited by member 12 Feb 2015 at 17:32  | Reason: Not specified

User
Posted 16 Feb 2015 at 01:00

Hi,

Thanks for your messages.

Sorry for being such a misery at times.  It can hit me when I least expect it. 

Last week didn't get any better.  Thursday's cardiac session resulted in me pulling a hamstring during one particular exercise and again, a heart rate of only 38 bpm at the end of the session.  My cardiac consultant decided to halve my beta blocker tablets to try to correct this but so far, it hasn't worked yet.

The uncertainty continues.  How will I cope with long working days when I find I get exhausted after a couple of hours of doing anything?  I even find I have to sleep for a couple of hours on my return from the exercise sessions.

Prior to my heart attack, even with cancer, I used to often work 10 to 12 hour days, sometimes six or seven days a week.  I will have to start work soon, as any money I had, has gone, but how do I cope with zero income until my first invoices are paid while I'm not getting my "massive" ESA benefit of £113.70 to live on.

Added to this, my wife is currently having tests for cancer this week, having had problems for a while.  

So really, even if I'm positive about my treatment working, it's the stress of other things in my life that can cause my low moods.

Sorry.

Steve 

Edited by member 16 Feb 2015 at 01:04  | Reason: Not specified

User
Posted 16 Feb 2015 at 04:18

Hello Steve life is certainly often full of uncertainty . This is the hardest thing to cope with I think with health issues. I am just starting to realise that our lives will never be the same since my OH was diagnosed with Pca. I think what makes it harder is his naivety . He will just take the word of the doctor and do everything he is told and disregards my research . I hope things soon pick up for you. Getting back to work may be good for your morale as long as it is not too exhausting for you.. I can tell you are worried about this. If you don't mind me saying I think you sound depressed and some of your fatigue may be attributed to this. Hope your wife is ok.. Georgina

User
Posted 16 Feb 2015 at 09:53
Hi Steve

I'm almost lost for words but feel I must offer some support if only here. I hope and pray that any fears over your wife's situation are unfounded. You've been through so much together over the past 6 months and what you've shared openly and honestly with us all has been an encouragement. You have never held back whatever situation you've been in up or down, it's been inspiring. Keep going!

Arthur

User
Posted 16 Feb 2015 at 10:26

Dear Steve

I am sorry to hear of the latest problems, not least your wife having the cancer tests.

(I had a breast lump last year, removed the day of the consultant finding it - and an agonising week wait for the pathology) so I really do understand how you feel and that you cant possibly take any more worry. I was certain it was cancer. Mercifully it was not. I hope the same goes for your wife.

There is no easy way through this difficult time waiting, you just have to stick it out.

I hope the heart issues are solved soon.

You have friends here who are thinking of you.

Alison x

User
Posted 16 Feb 2015 at 14:15

Ah Steve. Thinking of you both.
Fingers crosses for your wife and you.
Best Wishes
Sandra

We can't control the winds - but we can adjust our sails
User
Posted 16 Feb 2015 at 21:54
Hi Steve, sorry the rain has become a monsoon.

I don't really know you or your real situation only what you post but Rome was not built in a day mate. Please don't focus on what you used to do for now as that hopefully will return in time. Jack the exercise in and work for 2 hours in the morning and another couple in the afternoon at first with a good snooze in between. Then if you have any energy left in the evening do the exercise.

I know it's easy for me to say but small steps is what you need to do, I have only been off work for 4 weeks but I know that I could not go back to 12+ hour days and after chemo/RT I will be on short hours for ages.

I know I am lucky that I can still run at the moment, I am delighted with 55 minute 10ks, I used to do them in 37 minutes, I am happy that I can still do them at all.

It also sounds like you will sadly need to support your wife, do what's important in small steps in every direction.

Rooting for you

Kev

Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019

User
Posted 16 Feb 2015 at 23:49

Steve, ESA may not be very much but going back to work too soon and accidentally killing yourself would not help the situation! Someone here will know more about available benefits - could your wife claim as your carer for the time being? Have you spoken to your mortgage provider and other services about a temporary payment agreement?

I hope that her results turn out to be okay but knowing that it probably will be fine doesn't reduce the anxiety, and anxiety is NOT good for you. Let's all hope she hears soon xxx

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

User
Posted 17 Feb 2015 at 01:19

Hi Lyn,

Thanks. 

I already have arrangements in place with several places like my mortgage, council tax etc., but I was hoping to be back at work sooner than now.  Looking at the carers allowance it seems as if you have to be in a position where you can't feed or dress yourself for my wife to claim that.  I've looked at disability living allowance and that seems to be a similar situation, I would never qualify.  Anyway, I will contact the Macmillan Benefits Team to have another word with them.

I'm concerned that I can't seem to do even moderate activity without it affecting my heart rate.  This morning I did the washing up and when I'd finished and sat down for a few minutes, I checked my blood pressure and heart rate and it was down to 65/44 and 38 bpm.  That's similar to the time when I was in resuscitation at the hospital when I was having my heart attack.  It did recover ten minutes later but I'm sure that can't be good for me.  I just want to feel as if I can do things again.  If my wife's results are bad I want to be fit enough to be able to care for her.

Steve

 

 

User
Posted 17 Feb 2015 at 08:42
Steve

I wish you could have access to the benefit advisory service from our hospice I will ask when I go in on Thursday as they were fantastic when I needed help.I am in a meeting that afternoon with at least one of that team involved. I know you're going to be really anxious about the tests your wife is undergoing and coupled with your own mountain of issues life must seem very unfair but as Lyn says anxiety is bad and you need help to reduce that significantly.

I felt very let down by the Macmillan people I spoke to who just sent me reams of paper with no guidance at all, being self-employed or retired without a state pension seemed to push them out of their comfort zone.

I know in some cases someone from the DWP will even come out and complete a personal review.

I am sorry I can't do this before Thursday but as soon as I have been able to I will pm you.

Xx

Mo

 
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