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A New Chapter

User
Posted 09 Mar 2019 at 01:34

Hi Bazza, 

Thanks for the useful advice.  I've just had the date for my next oncology meeting come through, the 14th May so I will definitely discuss the possibility of what you suggested. 

Hope the rest of your chemo goes well  

Steve 

 

 

 

User
Posted 19 May 2019 at 03:47

Hi, 

This week saw the results of my latest PSA Test come through when I saw the Oncologist:  2.6, up from 1.9 in March. 

The rise was expected by the onco, who's happy for me to continue just on Zoladex until I reach double figures when she'll try adding Bicalutamide too.

Suffering badly from fatigue just now which is very much due to the HT but have no choice,  it will be a lifelong treatment. 

Steve 

User
Posted 19 May 2019 at 07:45

Hi Steve,

Sorry to hear your results have risen again, I tried to message you but your inbox is full.

Arthur

User
Posted 19 May 2019 at 07:51
Thinking of you, Steve
User
Posted 19 May 2019 at 09:54
Sorry to read your latest. From my HT times not worrying about low energy levels lessened the stress. Just go with the flow.

Keep strong

Ray

User
Posted 19 May 2019 at 10:05
Lack of energy is the worst side-effect of HT for me. A couple of weeks ago I went on a photographic holiday in Yorkshire, and walks which before my HT started I wouldn't even have been been breathing heavily after, left me an absolutely quivering wreck. It's not nice at all, although I know it's a vital part of my treatment. As others have said, I think you just have to accept that it's "the new you" and go with the flow.

All the very best,

Chris

User
Posted 19 May 2019 at 20:07

Sorry to read this Steve. Thinking of you.

Ido4

User
Posted 28 May 2019 at 20:34

Hi, 

Had a phone call from a doctor this afternoon which really shook my confidence in my GP surgery.

He phoned me up to express concern that the results from recent blood tests showed that my testosterone level was only 0.4, the normal range being 7 to 31.

Shocking news..... to someone not on hormone treatment, but when I told him I was on Zoladex for my cancer treatment, he apologised saying that he'd not noticed I had incurable prostate cancer. 

I'm really going to make sure that any appointment I have there in the future , is not with him!

Steve 

Edited by member 28 May 2019 at 21:11  | Reason: Not specified

User
Posted 28 May 2019 at 23:18

 Very concerning Steve. It worries me that doctors are under so much pressure they don’t really know their patients.

When my PSA jumped from undetectable to 0.3 the GP who looked at my result ticked it as being in the normal range despite my prostatectomy.

I was furious that they didn’t read or know my background.

Hope you are dong ok back on the HT bus.

Ido4

User
Posted 28 May 2019 at 23:19

Steve, it was great to meet you on Friday. This forum feels like a giant second family, but still nothing beats meeting up face to face those whose contributions you follow.
Can I remind you about the info on the walk you were going to email me?
Obviously, this should have been a PM, but your inbox is full.

Cheers, Andrew

User
Posted 28 May 2019 at 23:51

Hi Andrew,

Great to meet up last Friday when our local support group were invited to tour the new Proton Beam Treatment facility just outside Reading.  Very impressive but sad that it's only for private patients.  Not really something I could really afford, and anyway, as I've already had RT to the Prostate it would probably be of no use in my situation.

I'll send the newsletter as soon as I can but thinking about it, they're all available on the group's website.

Steve 

User
Posted 29 May 2019 at 06:18
It’s worrying when you read such things Steve. I was told my initial PSA of 22 was normal. Another experience at my surgery was when I requested a blood test form at reception and the surgery nurse who was there said I didn’t need a PSA test as I didn’t have a prostate

Our lives in their hands

Bri

User
Posted 29 May 2019 at 12:51
Unbelievable what happens at some GPs.

Hope you're well otherwise Steve.

User
Posted 29 May 2019 at 17:14

Hi Steve

Hope all is relatively okay. My GP insisted I still had a prostate following my RARP. 

Thanks Chris

User
Posted 29 May 2019 at 20:20
Steve ... 😱

CC ... 😂🤦‍♂️

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

User
Posted 31 May 2019 at 01:36

Hi, 

Having my latest Zoladex implant this morning (Friday).  For the first time, I'm having it two days later than it should be done.

I have always been very careful, making sure it was always done on the correct day but this time I have put work first. 

On Wednesday I had an important photo shoot in Bath, starting at 8am, and yesterday one in Cambridge starting at 8am.  I'm always being told that I should put my health first but unfortunately, bills have to be paid.

I hope I've done the right thing.

Steve 

User
Posted 31 May 2019 at 04:38

I cannot believe a slow release which is supposed to last 84 days would suddenly stop working on the 85th or 86th day. However, I have searched for such data in the past as I was curious how long you had to wait after the last injection before no more goserelin was being released, and no such data seems to be available - all testing seems to stop on the 84th day. The nurse doing mine said they are not permitted to administer even 1 day early, but to aim for a 5 day period from the 84th day, although I've not found any scientific evidence or manufacturer data to back that up. There is a graph of the release rates of the 4 week and 12 week doses on page 10 of this document: https://www.accessdata.fda.gov/drugsatfda_docs/label/2013/020578s034,020578s035lbl.pdf, but again not showing what happens on the days after 84th

It is interesting to note that the release profiles of the 4-week and 12-week Zoladex are completely different, with the 4 week peaking in the middle of the period, and the 12-week peaking (much higher) for the first 4 days. For administration to females, the 4-week seems to be required, but for males, there seems to be no preference between the 4-week or the 12-week.

User
Posted 11 Jun 2019 at 07:57

                     FIVE YEARS!! 

Today is exactly five years since I received the news that was to change my life forever.  I have Cancer. 

Up until then I'd never been ill, apart from the usual coughs and colds etc. that everyone gets.   I wasn't feeling ill when I received the news.  It was so unbelievable that I could feel so well when I had, what could be, a life threatening illness, but now my life was going to change.  

In the months that followed, my treatment started to wear me down with the side effects I encountered.  A heart attack, five months later, reminded me that I wasn't as invincible as I used to feel I was.  I had always thought those things happened to other people but I was so wrong.  My confidence in everything was badly affected. 

It's been a struggle at times but I have no complaints. I am very lucky despite finding out last year that my cancer had reoccurred and is now incurable. 

After five years, in spite of everything, I'm still here and very grateful. 

Steve 

 

 

User
Posted 11 Jun 2019 at 08:14
Happy anniversary!! Keep up the the good fight!!
User
Posted 11 Jun 2019 at 08:40
My husband had to wait an extra three days for his injection due to the nurse being called away on the day his was due. It was fine and they said up to five days was ok.
User
Posted 11 Jun 2019 at 09:09

I hope you’re still here for a long time Steve.

Great post.

Ido4

User
Posted 11 Jun 2019 at 12:09
Steve

Well done for 5 years. I'm jogging along right behind you.

It's amazing as you say how the treatment seems to wear you down more than the illness.

But you must keep on trucking, you're photography must help you keep active.

Best of luck for the next 5 years

Paul

User
Posted 11 Jun 2019 at 21:49

5 years so far Steve and many more to come I am sure. 

For what it’s worth I have had my zoladex late by up to a week due to me being away and I can’t believe that a few days will mean the cancer suddenly takes off so don’t worry about a couple of days.

take care 

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 Jun 2019 at 22:25

Steve.

I am just over five years since surgery, although we went down different routes we have both had "interesting" journeys. Here's to the next five years. Still here and still moaning.

Thanks Chris And Dawn.

User
Posted 11 Jun 2019 at 22:26
Keep reaching those milestones. It's been a tough time for you but use that experience to be even stronger in the years ahead.

Good luck

Ray

User
Posted 11 Jun 2019 at 23:03

Well done! Here’s to another 5 and another 5 and another 5 etc!

x

User
Posted 11 Jun 2019 at 23:04
Well done Steve. It will be 7 years for me in November since I was diagnosed

Bri

User
Posted 21 Jun 2019 at 23:51

Hi, 

Being diagnosed with Prostate Cancer, then having a heart attack and then finding out last year that my cancer was now incurable could be said to be "life changing" events. 

Now I'm facing an event that I knew would come one day but won't be easy. 

After 36 years, we have just sold our family home.  We have so many happy memories there, this is going to be so hard.  If I could, I would be happy to stay in our home but I have to face the fact that now is the time for us to downsize.  

It's Life Changing! 

Steve 

 

User
Posted 22 Jun 2019 at 03:48
Moving home after so many years can be traumatic especially if you move far away leaving behind friends and neighbours and various things you were involved in. My wife and I wanted to downside anyway but we moved from surrey to Devon to support our younger daughter and her children. One of the downsides has been having to travel to Greater London for hospital appointments, whereas I was only a few miles from the Sutton Marsden previously. It would have been a lot easier for us if circumstances had allowed us to stay within the district we knew so well. I think that unless you move within a district you know well it's better to do so before you get so old as it can be difficult to build new friendships when you move much further away and are elderly.

Anyway, wish you well in your new home and of course with your medical problems.

Barry
User
Posted 22 Jun 2019 at 08:28
Sometimes that change can bring plenty of excitement and lots of little jobs and projects to keep your mind occupied. But I’d hate to move as we have made our house our forever home. But El will probably have to move on when I do. :-((

Good luck Steve

If life gives you lemons , then make lemonade

User
Posted 22 Jun 2019 at 09:11

Hi, 

Fortunately we're only moving a few miles away into a retirement complex.  Not the first place we would have chosen but I feel it will be much better for my wife when I'm no longer here.

Steve 

User
Posted 22 Jun 2019 at 10:08
Just make sure it's not one of those places that locks you in!

Also it's not wise to try and predict the future to much none of us knows what is going to happen. I certainly did not see my 34 year old marriage ending the way it did. Or meeting someone new who suits me so much better.

So while I understand you have done the maths and worked out the odds don't assume that path is written.

User
Posted 22 Jun 2019 at 17:28

Steve

Hope all goes well with the move.

Thanks Chris And Dawn

User
Posted 22 Jun 2019 at 17:47
Good luck with the move Steve. Hope the sale goes through without too much hassle.

We've moved 7 times (excluding rental) and debating whether to move again ( I'm the more keen one by far) and if so where and what to.

Ray

User
Posted 22 Jun 2019 at 19:55

I am eyeing up those retirement complexes Steve but they are very expensive round here. Good idea to do it now as there is no way John could move now. Good luck and enjoy the change 

love Devonmaid cxx

User
Posted 23 Jun 2019 at 09:30

Good decision, Steve, but I understand your regrets. Once moved I hope it takes a lot of stress away, and remember nothing can take away memories of your long time home and life there.

I hope the positives make it all worthwhile.

Take care, Janet 

 

User
Posted 23 Jun 2019 at 14:14

All the best with the move Steve.

Ido4

User
Posted 23 Jun 2019 at 20:41

Watch out for hidden charges Steve.

Barry

User
Posted 24 Jun 2019 at 08:34

I hope you will be happy in your new home. Make sure you keep up with hobbies etc and keep getting out and about. I hope there will be lots of new opportunities for you. All the best.

Edited by member 24 Jun 2019 at 08:44  | Reason: Not specified

User
Posted 29 Jun 2019 at 03:38

Hi, 

Thank you everyone for your encouraging messages.  I really appreciate your good wishes. 

They say that moving house is one of the most stressful times, I'm beginning to find that this is true.  My wife is having second thoughts about the move into a retirement bungalow which could mean moving a long way from our lovely family and friends.   

I think we face difficult times. 

Steve 

 

User
Posted 29 Jun 2019 at 08:23
Hi Steve, we're facing a similar dilemma.

We've been here 25 years and love the house and garden.

However the maintenance on this place keeps me busy and I don't want to leave her alone with this in mind.

I reckon we should move while I'm feeling well enough, next year I could be knackered and not up to the rigours of a stressful move.

My wife wants to leave it for another 12 months at least.

Decisions decisions.

John

User
Posted 29 Jun 2019 at 09:05
Steve, out of our 7 moves only 1 went through with no hassle. This supposedly last move, as others here have done, is move so partners are taken care of abode wise. On reflection I'm not so sure it's the right decision. Just some top of my head thoughts :- Is the bricks and mortar issue more important than the support network; are we dictating how life should be for the surviving partner; are they not stronger than we think; are we not creating a double whammy of new life and new abode?

Tha answer to move or not for surviving reasons is I've not sure at all.

Ray

User
Posted 10 Jul 2019 at 08:45

Hi, 

I needed a bit of good news, after the way I've been feeling recently but I wasn't expecting this. 

After being told by my oncologist that she didn't expect my PSA to fall until she added additional treatment, my latest results show my PSA has fallen from 2.6 to 2.3 !

It's the first time my PSA has fallen since my first test after restarting treatment last year.  Since then, when the result was 0.775, all six tests had shown an increase.

It would be nice to think this would continue for a while. 

Steve 

 

User
Posted 10 Jul 2019 at 09:53
That has to be good news Steve. Must be a boost.
User
Posted 10 Jul 2019 at 10:59

That is a positive result Steve. It would be interesting to hear the oncologist’s view on the reduction.

Ido4

User
Posted 10 Jul 2019 at 12:57
Long may it drop
User
Posted 10 Jul 2019 at 13:42

Steve 

A good result, hope it continues.

Thanks Chris

User
Posted 10 Jul 2019 at 13:54

A step in the right direction at last. Great news!

Arthur

User
Posted 10 Jul 2019 at 16:55
Good news. We have thought about a lot of things and both like where we live and are doing the bigger jobs now and if either of us were to pop off we know the other has good neighbours, a manageable garden for either, walks on the doorstep and children fairly close. We thought about going back to our home area where we still know people but they are aging too and there are have been many changes since we lived there.

So here we are staying for as long as we can. We dread every psa test each month and know it is creeping up again so just keep going and praying.

I am sure you will be ok if you move and will adapt in time.

User
Posted 10 Jul 2019 at 17:02

Great news Steve! It's about time!

Flexi

 
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