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Feeling a bit down

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User
Posted 30 Dec 2018 at 20:03

Well as 2019 approaches i am wondering what the future holds. At my request i have been referred back from my GP to the oncologist as my PSA has risen fro <0.01 to 0.08. Ihad to advise my GP that it was the oncologist and not the urologist I needed to see. Not big numbers I know but after my RP i had RT when my PSA reached the same level  

I see the oncol on the 5th Feb. I was seriously considering retiring in two months but now considering if i should as i am worth much more if i die in service (yes dramatic I know) but i have to be realistic. Just feeling a bit peed off and not looking forward to jumping back on the treadmill i thought i had left some time ago ☹️

I suspect holidays abroad will be off the agenda due to high insurance costs, now that will be a pxxser as we love our holidays. 

Anyway just wanted to sound off as really dreading 2019

Feeling selfish, angry and pixxed off

Bri

 

 

User
Posted 31 Dec 2018 at 00:25
Sorry you are a bit wobbly Bri; John is also a bit down so it is perhaps the time of year playing a part as well.

Taking things in order:

1. Even if the onco says "Yes we might have a bit of a problem here" (which I don't think she will) she is not going to diagnose that you have a recurrence and are now incurable, so there is no new information to give to the insurer. John has been teetering between 0.09 and 0.11 for over 2 years but the onco is still saying 'wait and see' and the insurer isn't interested because he is still not officially a cancer patient.

2. I think you are in the same pension scheme as me? I have always advised people (while it was still part of my role in the LA) not to retire if they were terminal because the death in service is massive. John's DIS was 5 x salary so I had assumed that he would need to keep working if at all possible. However, as you know things changed very quickly last March - I took proper pensions advice and the advice was that he stood to gain more from retiring early (and before there was a health issue to disclose) and taking a part draw down and part- monthly income. The adviser pointed out that waiting because of DIS is only beneficial if you are likely to die within a few months (which you aren't) - otherwise, you could find yourself still working in 10 year's time and every year it would be harder to finish 'just in case' .... there would be no end to it. As it happened, the advice rang a bell for me and John retired at the end of the following week.

3. You have all those lovely grand-bairns to babysit, collect from school and watch in their nursery concerts, etc - it is time to finish work.

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

User
Posted 31 Dec 2018 at 09:44

Hi Bri, I’m sorry you feel low just now. Like others I've been through RP then salvage RT and am having my last PROSTAP3 injection (for now) on Thursday. I feel very nervous about the future but am trying to enjoy life each day. In my good moments I realise that any of us can only live each day as it comes but then the darker time fleets in and out. Such is life with this ba**ard disease.

I retired at the end of September having tried and tried to keep going because my wife would get 3X salary lump sum plus 30% of my salary as a pension if I died in service.

I was advised (like Lyn and John were) that I would be better retiring now rather than later.

Retiring has been a good move, it has taken pressure off me and I have started doing things I really enjoy. 

Travel insurance is still possible at a price I am (relatively) happy with. Holidays are so good, my wife and I love them.

My middle son is getting married next September, there’s lots to look forward to. With three sons my wife is over the moon at being invited to wedding dress shopping by our future daughter in law. 

It breaks my heart to think I might miss some future family events but I hope to be here for a while  yet...

Lyn’s advice is excellent. If you can, retire and enjoy life. 

Best wishes for 2019 to you, yours and everyone else on this forum.

Ian

 

 

 

Ido4

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User
Posted 30 Dec 2018 at 21:26

Hi Brian just to add about holidays. There is no reason to miss them. Lots of companies insure PC patients at reasonable rates including Insurewith and Boots.

Hope your appointment goes well. 

User
Posted 30 Dec 2018 at 21:33
Hi Brian,

Hope you and L have had a good holiday? Onco is a long time away. No one knows what will be. We have all Hope mate. Hopefully you can find a way to enjoy the time 'til then?

dave

All we can do - is do all that we can.

So, do all you can to help yourself, then make the best of your time. :-)

I am the statistic.

User
Posted 30 Dec 2018 at 21:38

Oh Bri , ever the worrier. I don’t think you ever did get off the treadmill to be honest. Not many of us do — even the ones who seem cured dread each psa  and worry if it’s deferred. And no you are not being selfish but maybe a tad pessimistic given how slowly things have progressed for you. If you can afford to retire then do it I reckon , and travel insurance is no prob at your stage. My G9T4N1 only cost the whole family £175 for a two week Med cruise with Boots travel. I see Onco 9 th Jan after a six month break at my request. I’ve been nearly vomiting with worry and chugging a fair few Diazepam. My psa is up to 82 from 38 ......
And just when work and life and joy were returning !! Good luck.

Edited by member 30 Dec 2018 at 21:40  | Reason: Not specified

User
Posted 30 Dec 2018 at 21:40

Hi Bri 

Like you I had the RP followed by salvage RT and then went on to HT which knocked PSA to undetectable. I am retired and we live on our state pensions + bus company pension + I do casual driving. I am 70 in 3 weeks and we have just come back from a week in New York and had a trip to Canada this year.

Anything is possible so enjoy 2019.

All the best

Kevan 

User
Posted 30 Dec 2018 at 23:00

Hiya Bri,

I've just come in from having a couple of pints in the Corner Pin, and look what i'm doing before i go to sleep...logging on to this site ! Just shows that for alot of us this disease is never far from our thoughts and it feels lovely when we are distracted and get a brief retrospective feeling of what we felt like prior to our diagnosis. Often I feel totally saturated in my head by PCa but we have an innate ability to carry on for both ourselves and those around us. I know you're feeling crap mate but I wish you all the best for 2019.

Paul.

 

 

 

 

 

 

User
Posted 30 Dec 2018 at 23:13

I paid an £18 extra premium for worldwide two-week cover for my declared medical conditions:

Hypertension, cholesterol, (both controlled pharmaceutically), and prostate cancer (non-existent, as it was excised six months ago).

So don’t despair.

Get more insurance quotes!

Cheers, John.

Edited by member 31 Dec 2018 at 06:18  | Reason: Not specified

User
Posted 31 Dec 2018 at 00:25
Sorry you are a bit wobbly Bri; John is also a bit down so it is perhaps the time of year playing a part as well.

Taking things in order:

1. Even if the onco says "Yes we might have a bit of a problem here" (which I don't think she will) she is not going to diagnose that you have a recurrence and are now incurable, so there is no new information to give to the insurer. John has been teetering between 0.09 and 0.11 for over 2 years but the onco is still saying 'wait and see' and the insurer isn't interested because he is still not officially a cancer patient.

2. I think you are in the same pension scheme as me? I have always advised people (while it was still part of my role in the LA) not to retire if they were terminal because the death in service is massive. John's DIS was 5 x salary so I had assumed that he would need to keep working if at all possible. However, as you know things changed very quickly last March - I took proper pensions advice and the advice was that he stood to gain more from retiring early (and before there was a health issue to disclose) and taking a part draw down and part- monthly income. The adviser pointed out that waiting because of DIS is only beneficial if you are likely to die within a few months (which you aren't) - otherwise, you could find yourself still working in 10 year's time and every year it would be harder to finish 'just in case' .... there would be no end to it. As it happened, the advice rang a bell for me and John retired at the end of the following week.

3. You have all those lovely grand-bairns to babysit, collect from school and watch in their nursery concerts, etc - it is time to finish work.

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

User
Posted 31 Dec 2018 at 09:04

Sorry to hear you are feeling low .. do you have an option at work to ’buy’ extra weeks holiday. if so i always think its a good place to start 'retirement'. it is great advise from Lyn to get pensions advise of course but also suggest a good review of how 'fuellung' you find going to work... the social interaction and the achievement of the day feelings can be sorely misses... going for extra holiday ( reduced take home pay) is definitely worth considering for those with the option... interestingly a lot of the 20-30 year olds i know are opting to take 7 weeks rather than 5 weeks holuday ( before they get used ti their income) plus they make much better use of sabbatical entitlements than we ever did for sure. Both my 26 and 28 year olds have already taken 6 month sabbaticals snd my son and his finance are both takung a month off after their wedding this this year. 

unheard of back in my day but the world has moved on!

Just an obseevation

x

 

 

User
Posted 31 Dec 2018 at 09:35
Bri

Looking back at the times when recurrence was being mooted I'm not saying mistakes but given what I know now perhaps I would have taken different life changing decisions.

Whatever you want to do or not do don't let cancer influence your decision.

Ray

User
Posted 31 Dec 2018 at 09:44

Hi Bri, I’m sorry you feel low just now. Like others I've been through RP then salvage RT and am having my last PROSTAP3 injection (for now) on Thursday. I feel very nervous about the future but am trying to enjoy life each day. In my good moments I realise that any of us can only live each day as it comes but then the darker time fleets in and out. Such is life with this ba**ard disease.

I retired at the end of September having tried and tried to keep going because my wife would get 3X salary lump sum plus 30% of my salary as a pension if I died in service.

I was advised (like Lyn and John were) that I would be better retiring now rather than later.

Retiring has been a good move, it has taken pressure off me and I have started doing things I really enjoy. 

Travel insurance is still possible at a price I am (relatively) happy with. Holidays are so good, my wife and I love them.

My middle son is getting married next September, there’s lots to look forward to. With three sons my wife is over the moon at being invited to wedding dress shopping by our future daughter in law. 

It breaks my heart to think I might miss some future family events but I hope to be here for a while  yet...

Lyn’s advice is excellent. If you can, retire and enjoy life. 

Best wishes for 2019 to you, yours and everyone else on this forum.

Ian

 

 

 

Ido4

User
Posted 31 Dec 2018 at 09:54

Originally Posted by: Online Community Member

Hi Brian just to add about holidays. There is no reason to miss them. Lots of companies insure PC patients at reasonable rates including Insurewith and Boots.

Or you can get insurance from any other company and exclude PCa from the cover. It's not something that's likely to result in any medical claims. That's what I've done myself. It's important that you declare the condition, or else your insurance may well be invalidated in the event of a claim, but every insurer I've investigated has been happy for me to declare the condition and exclude it from cover. Their "normal" rates then apply.

Chris

 

Edited by member 31 Dec 2018 at 10:04  | Reason: Not specified

User
Posted 31 Dec 2018 at 10:25
Brian,

I know nothing we say will stop you worrying though I suspect you are over-thinking this. Wait until you see the onco and she comments before planning anything. Just to tell you it will be a new one as the oncologist you last saw has left. The new one seems fine but it’s always difficult when the doctor changes. My goal was to stay at work but eventually health dictated things and I took voluntary redundancy. Until recently I got good world wide insurance from my bank and I’m a lot further down the road, they seem to Gaulle at pain relief drugs and now I cannot get a decent deal, though to be fair my travelling days are over.

Life has many ups and downs and it can feel very personal. But enjoy new year and January before you need to think about your appointment. Good luck mate.

User
Posted 31 Dec 2018 at 17:37
Thanks for all the replies guys. I am waiting for an ultrasound scan as I mentioned some discomfort to the GP so will see if all is well with that. I also have some mid back aching, not severe so I suspect it is either posture or stress related. But I will probably ask the oncol for a bone scan just to be sure

Bri

User
Posted 01 Jan 2019 at 12:43
Hi,

See my profile to see where I’m coming from. And whilst I would never suggest using “alternative” treatments in place of conventional ones. When I get a few aches and pains, Especially after playing golf, I rub ginger oil in my shoulders and back for almost instant relief!! Obviously the relief could all be “in my head” but who cares if it works!!😂

Hope this helps

Keep the Faith

J.

User
Posted 02 Jan 2019 at 19:43

Bri, others have said what i would have. Saying don’t worry to you is a waste of time but i will say  it abyway, dont worry!

always 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 02 Jan 2019 at 21:00
Hope you are feeling a bit better Bri. I've found that self medicating with a plant based alternative named after a Spanish saint as well as conventional meds works well for me.

;-)

dave

All we can do - is do all that we can.

So, do all you can to help yourself, then make the best of your time. :-)

I am the statistic.

 
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