"Living" with prostate cancer.

[don simon]

Good to hear that there is in improvement in the quality of life.
I too have come to quite like that part of the world, which was a surprise, and will be passing through again next week. I'll keep an eye out for you.

[macabethiel]

Hi Richard,

Pleased to hear you are at the half way mark and that your quality of life is improving.
Hope you manage a few more Summers yet - one step at a time eh.
Before you know it you will see the end of Chemo and then get to recover physically without the knock back that the drugs give you after each treatment.
The medicine is nasty but the benefit is worth it.

cheers

ted & wendy

[rustic]

Originally Posted by macabethiel

Hi Richard,

Pleased to hear you are at the half way mark and that your quality of life is improving.
Hope you manage a few more Summers yet - one step at a time eh.
Before you know it you will see the end of Chemo and then get to recover physically without the knock back that the drugs give you after each treatment.
The medicine is nasty but the benefit is worth it.

cheers

ted & wendy

Yes you hit the nail on the head, the side affects of fatigue are accumulative, as each chemo takes hold, but after the last one in September I will slowly return to a more stable state, my hair should start to grow back too.
Tough yes very tough as you know, but hey ho.. still here.
The oncologist said he would be very surprised if I couldn't do another year, and more, he is a boater too, and realises what good therapy it is to own a boat, if you are so inclined of course.
Richard and Roz

[macabethiel]

Originally Posted by rustic

Yes you hit the nail on the head, the side affects of fatigue are accumulative, as each chemo takes hold, but after the last one in September I will slowly return to a more stable state, my hair should start to grow back too.
Tough yes very tough as you know, but hey ho.. still here.
The oncologist said he would be very surprised if I couldn't do another year, and more, he is a boater too, and realises what good therapy it is to own a boat, if you are so inclined of course.
Richard and Roz

One regret I have is in never getting a boat or doing more boat stuff. I had a few holidays on the Trent as a 9/10 year old and did a bit of canoeing in my early teens. My one decent journey was when I crewed on a boat when I was 17 going from Port Dinorwick in Wales to Barcelona. The journey took almost 4 weeks in a 90ft converted fishing boat with sails & motor it maxed at about 8 knots.

I had to Steer for 2 hours and then a 6 hour break and then 2 hours at the helm again. No Autopilot either just used Radio Beacons and Light Houses for navigation. The crew was the Captain, his wife and myself. The owner who was on board just took the helm when we left port. His wife suffered terribly from sea sickness. I had one 24 hour bout of sickness when we crossed the Bay of Biscay after that I was fine.

Went via Newlyn for fuel and compass adjustment, across the Bay of Biscay to Coruna in Northern Spain. Hugged the coast of Portugal and into a small place called Cascais for Provisions. To Gibraltar for fuel and a Bank Holiday stop over.
Got blown backwards by the Levante and had to take shelter in Motril before going on to Barcelona.

[johnb5177]

What was it that Ratty said........"There is nothing quite like messing about in boats..."

[johnb5177]

Uncle,
I think your post is truly inspirational.
You have won many battles in your war with a ravaging problem, you have a strong faith which is a blessing and I am sure helped you in your tribulations.
You have a strong and loving family surrounding you and supporting you practically and emotionally with love.
You have many varied interests, that involve you as physically as is possible, but keep your grey matter running full tilt.
You have many friends, other I'm sure, than your Nissan/Ford family here, that also care deeply for you and support you.
If there was ever a bloke to get a 'hero' award it's you....
Keep it going, so strong, so brave.......

[jims-terrano]

Good to hear you have some quality back in your life Richard and as said fingers crossed you have some more summers to come. With a bit of luck the gathering will take place then.

[solarman216]

I told you a good while ago to keep fighting, and you have, and as you say you are still here, boats yes the greatest therapy, we sold our narrow boat 10 years ago, but are hiring one in August to relive the memories and also to cruse part of the only canal we had not done the Kennet and Avon, keep it up Richard you can do it, Rick

[rustic]

Well today is Chemo 8 day, not sure how many more of the 10 I will have to endure. This has not been a good session.

I have been more fatigued than any previous session, and achieved very little on the project front. I like to keep myself busy.

The session started off with the chemo, then a day later my son, his wife and our grandaughter arrived from their home in Bahrain, they were only stopping a week. They had a full week planned for them, theatre, meals out, visiting family, and also wanted to have a cruise on the boat on the Thames.

The week didn't start off well, I was so tired I was late getting up, and I was often in bed by 6:00 pm I am not sure if I had been exposed to foreign viruses or not, but I think I was starting to fight off an infection, not good if your imune system is wrecked by the chemo.

Roz and I got to Oxford the day before the planned trip with the intention of sleeping on the boat that night, this we aborted, and we slept the night at our daughters as I was too tired and just not interested at all. Anyway the following day we got to the boat by noon, and we went for a short cruise to Abingdon with the family, After the cruise they left, and we sorted the boat out, but I was in extreme pain and could hardly walk. The following morning we were taking them back to the airport. The middle week of the session followed a similar pattern, resting all the time, and again the last week very similar indeed, not what I am used to. I am now taking more morphine to counter the pains whilst just sitting, which is even worse when I travel by car.

Yesterday we had the oncologist meeting, I tried to explain (wishful thinking!) that maybe a close encounter with foreign viruses might be to blame, he was not convinced, but my quality of life this last session has been severely compromised and things have to be done ASAP to change this. He agreed we should continue with session 8, but I am so scared that the treatment will be worse than the last, which is expected, as the side effects are accumulative.

Added to this, my PSA levels, are increasing slightly each session, meaning the treatment might not be as effective as we hoped. The oncologist has suggested another scan to see what is happening, and where, and it might mean stopping the last couple of chemos.

But what next? they have a few options for further treatment, but they need facts before they can recommend alternative treatment.

It has been quite a blow to Roz and I, we knew deep down as this is only palliative care, it was never meant to be a cure, so this extra time I have had this summer has been a bonus, and we hope any further treatment will delay the inevitable outcome.

Trying to be positive, when my son and family were here, they anounced that we were going to be grandparents again, due in March next year, it does mean that we won't see them this Christmas, pregnancy and flying etc but they have planned to come over next month for a couple of weeks.

This is great for us, family and friends are so important to us.

So, as I am awake at this unearthly hour, time I made an effort to rest a while lol.
Some of the above information I have mentioned in other posts, but I thought best to keep everything in one place.
We will keep in touch,

Richard and Roz

[Blocky10]

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

[rustic]

Originally Posted by Blocky10

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

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

[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]

Originally Posted by 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

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

[Lazy-Ferret]

Originally Posted by Blocky10

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

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]

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