"Living" with prostate cancer.

[rustic]

Thinking of you and your family Rustic as well as your on going battle.
Don't tell anyone here but yours is the only thread I read word for word:lol

Wow Ian, that means a lot to me, I say it from the heart as it comes to me, I spend a while doing spell checks. lol... This forum together with a boating forum I frequent has given me a great deal of support. At times, as you can imagine, emotion takes over, and I have a few days I just can't cope, my wife Roz has been so supportive, it really cuts her up as she tries not to show it.
It is so important that I carry on, planning projects and making things.
I am planning to be around a lot longer...
Uncle Rustic:thumb2

 

[emjaybee]

That's handy Rustic, we're planning to "put up" with you for a lot longer too. Hang in there bloke, we're all rooting for you. Take care of yourself and Roz.

Michael

 

[rustic]

That's handy Rustic, we're planning to "put up" with you for a lot longer too. Hang in there bloke, we're all rooting for you. Take care of yourself and Roz.

Michael

:thumb2 just as long as I don't keep going on about having owned my Mav since new for over 22 years though .. :lol:lol

 

[Lazy-Ferret]

Thinking of you and your family Rustic as well as your on going battle.
Don't tell anyone here but yours is the only thread I read word for word:lol

I find it hard to read, but like you, read every word, and inwardly digest it, normally with a lump in my throat for both Richard, and also partly as it brings back some very sad memories for me. My dad was a very personal man, and never put is feeling into words, so I think that by reading Richards posts, I feel I am also getting an incite in just what my dad went through as well.

 

[macabethiel]

The Accumulative Effect will end!

Uncle Rustic,
As you know when I had my Vincristine based Chemotherapy back in 1987 towards the end of my six month period I did get to the stage where I felt I could not continue due to the side effects. There were many including loss of feeling in my feet, burning eye balls, loss of taste but worst of all was the sickness bringing up just bile.

I had terrible sickness that would start within 15 minutes of my group of injections given on a Friday morning at the Out Patient Clinic. One of the Syringes was the diameter of a milk bottle containing the major bio-reactive ingredient and sometimes the vein in the back of my hand would balloon out and they would have to stop and insert a new Catheter into the back of my other hand.

My vomiting would continue every 10-15 minutes for the next 24 hours so no sleep on a Friday night. Then the period between vomiting would start to stretch out a little by Saturday afternoon with gaps of 30 minutes until by Sunday morning it was up to 2 hours between vomiting. No food obviously until Sunday afternoon. Then like a light switch being turned back on I would feel hungry and eat my "Bejam" ready meal consisting of Chicken Vindaloo with rice. I had a freezer full as it was the only food I could taste for the next 3-4 days. In reserve I would have Anchovies on Toast. No alcohol allowed during 3 weeks of my 4 week treatment cycle that continued for 6 months.

I had to contend in the last 3 treatment sessions with the effects of "Pavlov's Dog" I would start being sick when I woke up on a Friday morning due to the psychological effects of knowing what was to come, this would continue as I reached the hospital grounds and whilst in the waiting room area. In those days there were no injections to prevent nausea just some tablets that I would vomit up instantly.

Looking back I must have been mad to volunteer for a trial to continue the Vincristine at half dose for another six months in the hope of killing all the cancer cells. Especially as 2 years later my Hodgkin's Lymphoma came back anyway. The later treatment in 1990 was much kinder and a lovely District Nurse would visit my home to give me nausea control drugs that worked. Still no dedicated Chemo Suite in those days I would go on a General Ward for the days treatment.

But here I am to tell the tale - another long term survivor you are near the end of this round keep it up!

ted

 

[johnb5177]

Uncle,

Keep up the great work. I also read your posts carefully, and relish the strength, fortitude and self effacing humour you manage to inject, into a very difficult situation.

Keep going on about your 22 year old Mav, please....it reminds us all we have great machines....may the force continue to be with you....:thumb2

 

[rustic]

...
Keep going on about your 22 year old Mav, please....it reminds us all we have great machines....may the force continue to be with you....:thumb2

As if I need encouragement lol. :lolCurrently in the chemo ward having the chemo 8 about an hour to go. I will be fine today and tomorrow, the additional steroids make me like Billy Whizz.
Rustic

 

[macabethiel]

As if I need encouragement lol. :lolCurrently in the chemo ward having the chemo 8 about an hour to go. I will be fine today and tomorrow, the additional steroids make me like Billy Whizz.
Rustic

If the steroid is Prednisolone it used to make me eat like a horse once the nausea had passed and of course after 6 months I developed the classic "Moon Face" look that you get on Chemo. It does go away after a few more months and I returned looking normalish!

 

[rustic]

If the steroid is Prednisolone it used to make me eat like a horse once the nausea had passed and of course after 6 months I developed the classic "Moon Face" look that you get on Chemo. It does go away after a few more months and I returned looking normalish!

You are spot on, Prednisolone is the main one.
Just heard today,that my PSA has increased, from the last session yet again, and the oncologist is unsure if the chemo is actually working as well as can be expected, and they have arranged for a ct scan and a bone scan to be done ASAP to help determine the cause.
So we have done chemo8 today, and hope the scan will be done within 2 weeks.
This will then help with the next option of treatment, it might be continue with chemo 9&10 maybe some radiotherapy to any tumour sites etc or give alternative treatment, or have a rest from the current chemo poison and wait for it to leave the body, then maybe start an alternative.
They are happy that they have a library of treatments available, so I feel a little better today. I will have to see how the side affects are over the next 2-3 weeks, I could really regret this. :doh:doh but I am tough enough lol...
Uncle Rustic.
:thumb2

 

[rustic]

Not good news.

My suspicions were in fact correct. The chemo has in fact stopped working, so has been discontinued, but as a consequence it has allowed the cancer to spread to new areas, the ribs, my shoulders and more to my spine. It would be very difficult to target with radio therapy, individual tumours on my spine, due to the number and the fact I have already had three treatments already, however today they have given me an infusion that will help bone growth, and maybe slow down the growth of the cancer in some places. So overall, not good news at all.

The question had to be asked... how long? :nenau

Taking everything into consideration, and it has been virtually two years since my initial diagnosis, and looking at the poor outcomes of two treatments, they think just over a year.
To be fair, I never thought I would see the first Christmas but now I have a chance, if all goes well, to see my grandchild to be, due in March 2018, assuming they can fly over to see us.

Well hopefully I can spend the rest of the summer without the poison and side effects of the chemo. We hope to spend some time with our family, some boating time, with maybe an opportunity of travelling to Henley and beyond.

So there you go. I will now have a monthly infusion, and an 8 weekly oncologist visit, so at least less time getting to and from the hospital.

Now having stopped the chemo, I don't have to avoid a lot of foods, anymore, I won't need my individual private chalice at communion, and I will be able to hug anyone I want... Roz permitting of course.

I guess from now on, I will just report on any major changes. I am so pleased I am no longer on the chemo, pity it was under these circumstances.

Thank you for all your support,

Best Regards,

Richard and Roz

 

[jims-terrano]

This is very bad news indeed Rustic. I hope now the chemo has finished you can have some quality time with your family making memories for you and for them.

You know you have friends on here if you need to just sound off or chat.

 

[Bigbunny2007]

Love how your planning what you want to be doing even after some really crape news! Enjoy every minute and do what makes you and your family happy. Your courage and determination is another level! This has not broke you its made you stronger, take a bow :clap

 

[macabethiel]

Life is just not fair.

I have sent you a PM Wendy & I are devastated with the latest news from you & Roz.

Ted & Wendy

 

[Blocky10]

That's shit news Uncle Rustic. Best you get out and put some miles on the mav asap.
Love to the family :thumbs

 

[rustic]

The reality of seeing the scans, seeing where the cancer has spread to, is devastating.
The thing is, it can only get worse. Yes I have been strong, but not sure I can keep that up now.
I have just woken up to a new day, with a reminder that the cancer has spread into my right shoulder, looks like I will have to start the day with Morphine.
Yesterday I was tempted to rename the thread "Dying" with Prostate Cancer.
I think the day I do that is the day I give up. When I started the post I purposely named it "Living" with Prostate Cancer, well I have been so far.:thumb2

We have said nothing to our grandson, who is nearly 4, but yesterday around the time of my appointment, he made a pretend phone call to his Nana ( my wife Roz) he said... "Look after Grandad Nana" Where did he get that from, and last night at bed time, he started crying, not normal unless he is stressed or ill.

Boy, this hit me really hard, are we sending out body language signals, without knowing it?
It was hard telling my son and family in Bahrain via skype, last night, due to the time difference, they had already gone to bed, I felt it was a bit selfish of us, but as the truth is out there, we didn't want them to pick it up via social media first etc.

The worst part is travelling, any bump, pothole, braking manoeuvre etc. hits my spine, and I cry out with pain. So will I be trapped in the house?
I am nearly at the point of getting a stair lift, I think logic says lease one, it might only be a year :doh If I survive 2, that will be a bonus. I would welcome any advice on that front lol.

To all the guys who have sent me PM's I have read them all, and we thank you for the support, and I will post a reply later, after I get my head around this.
I need to find the positives in this nightmare to focus on.

To be fair, it has been torture for two years now, daily reminders that I am on death row, you wouldn't treat animals like this.

I apologise to you all for venting my feelings this way, I might feel differently in a few days.
Uncle Rustic.

 

[don simon]

You're an inspiration Uncle Rustic.

 

[jims-terrano]

Richard, nobody minds you venting/typing on here as you are a valued member and friend to us all.

If your thread reminds us all and future members to value life and family you have done a wonderful lasting thing.

If your thread makes blokes grow a pair and seek medical advice again you have done an amazing thing and likely to have saved lives.

Don't give up and keep in contact with your friends on here.

You probably don't quite appreciate right now just what an amazing wonderful thing you have done by sharing your life and feelings with us. You know several of us have been to see the doctor due to your post and advice. You may have saved others which is an amazing thing to do.

 

[johnb5177]

Devasted to read this news Uncle. .....but you have grabbed this devil by the horns and given it the best kicking around.......all your friends and Nissan family here are here whenever you need us.........:grouphug

 

[solarman216]

Rustic please do not ever feel the need to apologise to us on here, we are with you all the way and you have shown great courage in keeping us informed, while we do not want to see you suffer, we do need to hear how you are dealing with this devastating issue, our hearts are with you, Rick

 

[makeitfit]

Man this is a bum deal . I've been swanning around sailing and racing the world's best while you've had this going down. Not been on much of late and really sorry to have caught up with this news. It's such a shame. I can not imagine how you feel but do admire you frankness with us all. On that note I say a 4 year old is the best person to talk to. They will not be judgemental or PC . They will take it on the chin, inwardly digest and probably bring you some Lego to play with. I hope you find solice in your time out of chemo. Take the pain management and make the absolute best of a sod awful job.
Invest in your remaining time with your family and get fiddling your tax quick sharp.
I don't know what to say really.
All the best to you mate .