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User

Posted 03 Feb 2018 at 07:48

Just a wee update.

First session of chemo done (tuesday) and dusted with no major side effects as yet.

Only some aches and pains, almost as though you have been stung with a bee, smell is like metallic or burning plastic, so strange.

Going to carry on with my job as I have been given the green light to carry on working with no restrictions and it is down to me.

So it's 1 down and 5 to go.

My only concern is the letter from the Onco states it appears to be some cancer at pelvic area but doesn't actually state it is, I know it probably is though and will discuss with Onco next week.

Onwards and upwards

User

Posted 03 Feb 2018 at 09:52

Good luck for the rest of your treatment ,Gary continued to work as it helped his mental state .But be careful and listen to your body as things can change pretty quickly .
Best wishes
Debby

User

Posted 03 Feb 2018 at 09:57

Good luck from me too.

I hope the rest of the chemo goes as well as the first

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

User

Posted 03 Feb 2018 at 10:08

Hi Debby.

Your correct about work, it takes our mind away from the dark place where we find ourselves.

Yeah i was told by the nurse that things can change quickly with regards symptoms. Before I would have just pushed through it but this time I'll definitely listen to the old body.

Just need to get rid of the metallic taste now.

Cheers

User

Posted 03 Feb 2018 at 11:03

Best wishes from me

User

Posted 03 Feb 2018 at 11:41

Hi Chris.

Best wishes back to You, here's hoping that something can be found soon to help us all.

I've not posted for a while as everything seemed to be going along nicely until the new year when the bone scan came back.

Read your story again and like you I fear that I too may not see 60 but we can only live in hope and try and enjoy what we have at present.

Take care mate.

Cheers.

User

Posted 03 Feb 2018 at 11:49

Hi Sandy,

Just been reading your story. I hope the chemotherapy works for you. I notice you are been treated at the Beatson - and me. Is Rob your consultant? I always feel lifted after a chat with him.

All the best

Dave

User

Posted 03 Feb 2018 at 12:10

Hi Dave

My RT was carried out at the Beatson in Airdrie. The chemo is being done at Wishaw General.

Are you from the Lanarkshire area.

Cheera

User

Posted 03 Feb 2018 at 14:09

Oops, wrong Beatson Sandy. I’m being treated at the Beatson West Of Scotland Cencer Centre in Glasgow.

Dave

User

Posted 03 Feb 2018 at 15:24

No worries mate.

Hope all goes well with treatment.

User

Posted 10 Feb 2018 at 13:01

All

First session of chemo completed nearly 2 weeks now and so far no major side effects. Last Sunday I thought I was being stung by a million bees and taste/smell is slightly metallic but bearable.

Met with Onco on Friday who informed me that the dark areas are small in the sacrum area and he is slightly baffled why this is due to my PSA being only 0.2 and testeserone 0.09.

Interestingly when asked about prognosis he stated it's obviously not as good as before. If kept under control then it is years if PCa grows then who knows.

Onwards and upwards

Sandy

Edited by member 10 Feb 2018 at 13:59 | Reason: Not specified

User

Posted 31 Mar 2018 at 11:21

Just a wee update.

Half way through chemo and so far no major side effects apart from a dose of the cold which took ages to clear up and my hair falling out, not a big deal as it was going anyway. I have also managed to keep working away but unfortunatly I now need to make a major decision with regards work, met with my consultant and I asked him the big question on my outlook. Basically he told me that I probably wouldn't see pension age due to the nature of my PCa, so with a 7/8 year timeline I feel that I need to make the most of what is left. I know that a lot of guys out there would settle for 7/8 years but to be told that it does take a wee bit of getting used to. Anyway time to make the bucket list now.

Cheers

User

Posted 31 Mar 2018 at 11:39

Hi Sanders thanks for you update on chemo. Glad to hear it’s not been so bad for you and is tolerable. Whilst I’m still behind you on treatment , I was told at 50 that I may have roughly 6 years , but it’s all up in the air at the moment. We are enjoying life in some ways more than we ever have. Lots of treats meals and holidays , but mostly restricted by having an 8 yr old son who may be the biggest victim of this s**t disease. I hope things pan out well for you and try and stay strong. I know it sits on your shoulder each day but staying busy helps me ignore it. I’ve struck a balance between part time work and a new hobby of RC cars. Keep well

User

Posted 31 Mar 2018 at 12:01

Sorry to hear about your " timeline" Sandy. I sometimes wonder if it's that useful for specialists to say how long they think people have got. So many times on here we see men who defy all these estimates and there is always hope new treatments may come along.

I was just thinking about Prof Stephen Hawking and how long he was given at diagnosis ( entirely different disease I know)

Although easy for me to say not being in your situation I hope you are able to enjoy your life and by all means have a bucket list if you want one. Make it a long one ☺

Best Wishes

Ann

User

Posted 31 Mar 2018 at 12:08

Hi Chris

Just read your last update, good news that it's not spread to the bones.

As you said we do need something to occupy our minds so I've took up golf to pass the time and I'll probably be finishing up work in the next few months. It is heart breaking for your son, my daughter's are in their 30s, as yet i dont have grand kids but all I think about is that I won't be here long enough to see them. Anyway going to do the same as you and take life by the horns and enjoy what is left.

Take care mate.

Sandy

User

Posted 31 Mar 2018 at 12:23

Hello Chris,

I'm still pretty new to this but I'm 50 years old and I have exactly the same staging as you so outlook is pretty grim! I start RT a week on Monday and getting a new bathroom this Tuesday :) (?)
I don't know what to think. Chances of full remission for me with radical radiotherapy? Slim to none........

And I'm sick of getting patted on the shoulder!

Good luck to you!
Regards,
Richard

Edited by member 31 Mar 2018 at 12:25 | Reason: Not specified

User

Posted 31 Mar 2018 at 13:37

Sanders I hope you get some reliable independent financial advice while you decide what to do with the remaining years - for example, weighing up whether you would be better dying in service or drawing down pension lump sums early. We have spent a couple of months doing this as John's death in service grant is 5 x annual salary (a significant amount of money to give up) but the pension companies can offer enhanced deals if the person is unlikely to be drawing a pension for 30 years!

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

User

Posted 31 Mar 2018 at 14:34

Thanks for the update Sandy.

Wishing you all the best for the remainder of the chemo and moving forward.

I was told the same amount of years by my oncologist in January 2017.

He was cagey though, he said it could be less, it could be more.

Like you I am looking at giving up work to enjoy life more as my job takes so much out of me I have nothing left in the tank.

Lyn’s advice is sound as usual.

I spoke to a financial advisor through my professional association and have a personal financial advisor too.

My in service death grant is 3X salary plus a pension of 30% salary for my wife.

Whereas if I take my pension early I will drop to 30% of my salary plus lump sum with my wife only getting a small proportion of that if I pop my clogs. I seriously thought, and sometimes still do, staying on at work for the better widow’s Pension for Sandra.

To my wife and I it is about quality of life.

We have no mortgage now so it makes it a bit easier.

Good luck with treatment and looking at giving up work.

Ian.

Ido4

User

Posted 31 Mar 2018 at 15:35

Hi Lynne and Ian.

I have started the ball rolling with regards finishing up and also looking at my pension. I may opt for a draw down pension as this gives me my pension pot but need to do this before I reach 60. My wife will get a good pay out if I die in service but once I leave service this dissapears although she would still get a pension but the lump sum would go into the pension companies fund. So better to take what I can now so areas I can enjoy it and my family is taken care off. I asked the consultant about my future so that i could start putting thongs in place. Thanks for all the advice.

Sandy

User

Posted 31 Mar 2018 at 15:50

I hope you make a huge bucket list Sanders and that you get to do everything on it.

Best Wishes to you and your wife.

Enjoy today and plan tomorrow and Christmas and Birthdays and holidays etc etc..... :)

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

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