View Full Version : "Living" with prostate cancer.
As most of you guys know, I have advanced prostate cancer, and with the latest TV campaign, it's time you guys got yourselves checked out.
I am not after sympathy, I just want to tell you as it is, from a sufferer, and if I can help prevent you guys going through what I am going through, so much the better.
Some things look out for.
Note, don't panic, not all these symptoms say you have prostate cancer, some will be infections, some will be a large benign prostate.
Frequency of urination.
Urgency, rushing to the toilet
Blood in your urine or semen
Getting up several times a night
Pain whilst urinating
A low flow or low volume
Difficulty going or starting
Dribbling
There may be other signs, and you might only have a couple of these to justify going to the doctor.
Now listen very carefully... I shall say this only once..
Doctors do get things wrong, I had been going to the doctor for over 10 years, nearer 15 with some of the above systems, had three seperate doctors with the rubber glove...
Yes the prostate is enlarged, nothing to worry about, then 9 months after the last check ...I was referred to a specialist, where I had 12 biopsies of the prostate, not a nice experience, several CT MRI and neuclonic scans.
"you have advanced and aggressive prostate cancer, T4 (worst) you have a gleason score of 9 ( max is 10). It is metastatic, ie spread outside your prostate, surgery to remove the prostate is not an option.
The cancer has spread to your lymph glands, your bladder, your pelvis, your sternum, your spine. There is no cure, some treatment will be an option, but it won't cure it. Any question?" Next patient please... yes that's how the breaking news appeared to me...
These are not words you want to hear. There is no going back, it's not like a broken arm or leg. It's best that it doesn't get this bad to start with, so guys, Time is of the essence. Do not wait 9 months... Do not wait a month, do it now, today... Use my case as an example, show them this thread.
This all kicked off in August 2015
I was offerred hormone treatment, chemo and radiotherapy was not considered an option as the cancer was widely spread.
I had the option of going on a drugs trial, called the "stampede trial" rather than have hormone drugs one after the other, they thought that having three hormone drugs together, not been tried this way in UK, so not licenced, hence the trial. With the drugs taken sequentially, life expectancy 1+1+1 =3
however with the trial, they were hoping that 1+1+1=4 or greater, so I opted for the trial.
Since August I have been going for regular checks, with umpteen blood tests, more CT scans, more MRI scans etc and it showed a progressive reduction in my PSA value, and on the last scan 3 months ago it showed a 25% shrinkage in most of my cancers
Right... had my 3 monthly meeting on monday this week with my oncologist, my PSA has risen slightly 0.9 to 1.4, my oncologist said it was normal to see fluctuations. I also mentioned a pain in my chest, and he checked past scans on the cancer in my sternum, that had shrunk, but it may now have started to grow, so he has arranged a scan coupled with radio therapy, initial scan and set up booked for Tuesday next week in Derby, then radio therapy after that.
That should zap that. but what worries me is, have other cancers started to grow?
There are side effects with the hormones, any one of which causes fatigue, hot flushes, dizzyness, high blood pressure, sleepless nights, forgetfulness, mood swings, and emotional changes. Then you have to remember, I am on 4 of these.
1 a three monthly injection, 2 for the trial, another to try and counter some side effects of the others. I am also on steroids, and blood pressure tablets, again to help counter some of the side effects too.
As my bladder is totally shot, I initially had an indwelling catheter for three months, this caused 3 infections, it was difficult to walk, there were embarrassing bypasses and blockages, midnight visits to A&E
Since then, by my own research, I will say, I am using an external condom catheter, a "Conveen"with a leg bag, and I am now trying a larger night bag on a stand for night time use. All this changing and setting up takes time morning and night, and sometimes I sit on the bed in despair as I look at the pipes attached to my previous pride and joy... (hormones affect that too).
The conveen has allowed me to go out during the day, I still drive, i still have a drink or two. Going abroad is a no no, no one will insure me, at a decent rate and being on a trial even worse.
So to come back to the title, "living with prostate cancer" It's not good, things are getting worse, better not to have it, or better to get it diagnosed early.
I am posting this, hoping to make a difference, I have posted some of my issues in other threads, but I thought, with the current TV campaign, it deserves it's own thread.
I has not been easy to write this thread, I am still "man enough" I think to tell you, I am in tears writing this, but if I can save one life or make some lives have a greater quality of life then it has been worth it.
It seems guys, I have looked after my mav better than I have looked after myself, but like most things, I left my health in the hands of others, whereby my Mav has been left in my hands... Makes you think doesn't it.
Posted with sincerity.
Richard
aka Uncle Rustic, or just plain Rustic
Blocky10
16-06-2016, 08:48
That made my eyes water Rustic. Its a sad private story and I thank you for sharing as many wouldn't. I can not imagine what you and your family are going through and send you my best.
Only this week my brother n law went to the doctors with a sore knee. He hadn't been for 8 years, turns out it was water on the knee. (housemaids knee). While he was there he mentioned he was having to get up in the night 3 or 4 times for the toilet. Out came the rubber gloves and was told he had the signs for prostate cancer.
He had a blood test yesterday and is awaiting results.
He is a private person and wouldn't have gone to the doctors about frequently needing the toilet.
This is where it needs to change. There is nothing to be embarrassed about. If in doubt, seek advice. The doctors chose the profession, it is their choice, what they wanted to do, to help people, so people should use them.
Again Rustic, thank you for the post. Months back you posted about getting your "paperwork" in order. That you realized your family wouldn't know where to start with the day to day things you have done for years.
This opened my eyes and I have now an a4 book with details of everything listed, and still things crop up that I've missed.
People with experience in something are always worth listening to, its just unfair that someone has to suffer.
Ian.
makeitfit
16-06-2016, 09:53
Damn fine post there Rustic and bloody unfair as is life unfortunately.
I went to see the quack last year for a prostate check. I had faffed around a while before going , thinking my ailments would just go away . Many stupid man thoughts later I did actually go and get the finger of fudge test :eek:
I'd just noticed a slowing of the flow , it may even have been after your earlier posts last year. Anyway it turned out I did have an enlarged prostate :o
Further tests proved to be cancer negative . I've since reduced my coffee intake radically and remain vigilant to any further changes.
That said , your post today has prompted me to go and check again.
Good luck with the trial and let's hope for a speedy remission :thumbs
macabethiel
16-06-2016, 11:45
Well Uncle Rustic I booked my appointment to see my GP a week on Friday.
Not looking forward to going it's all a bit embarrassing the thought of the Doctor doing the Fudge test but your post has driven me to go even though I feel confident I am okay.
Decided against the woman doctor and have gone for the bloke instead - hope that does not sound a bit Gay!
Your post has reached me any roads and it was a bit of a tear jerker when I read it out to Wendy.
makeitfit
16-06-2016, 11:50
Decided against the woman doctor and have gone for the bloke instead - hope that does not sound a bit Gay!
I know I take the mickey on the gay side :lol but the finger of fudge was well over rated . I asked for the lady doctor thinking nice petite finger :naughty Access denied I got the bloke :o
Just remember, have good old dump before you go :lol
Good luck:thumb2
Monaro Pete
16-06-2016, 12:32
I don't know what to say Rustic.
Though there's nothing wrong with shedding a tear or two, especially when you've been through & going through what you are.
It can't be easy for you. I know my dad has a problems with his bladder, but it's nothing compared to what you have.
All I can say is............ I've read your joke (no more please :eek: :p ) & you still have your sense of humour which goes a long way. It tells me you're a fighter & you will carry on fighting.
Keep fighting. Keep that chin up & keep proud :thumb2 :thumb2
Thank you all for replying to the original post, my aim is to inform as many people as possible.
Now there are members on this forum, that maybe wish to share their own experience, but not have their name made public, if you wish, you can PM me and I will pass on your comments, as from a forum friend, and I will keep your name in confidence, or you may wish to ask a moderator or other forum member to do this for you, after all, the more we know, the quicker we can beat this.
Uncle Rustic.
perelaar
16-06-2016, 13:46
Rustic, thanks for posting. Even though I don't have it myself (I think), several of my family members do, although not as advanced.
As of what age would one need regular checks?
Rustic, thanks for posting. Even though I don't have it myself (I think), several of my family members do, although not as advanced.
As of what age would one need regular checks?
Well I was diagnosed last year at 60, having been concerned for 10-15 years, so I would say from 45 onwards in my case... but that didn't work for me. :doh
Just a quick note, the PSA test alone is NOT a reliable indicator of prostate cancer either way.:nenau
Following my earlier post I am aware already of at least two forum members that headed my similar post several months ago. Both were checked out and both found to be fine, and one is having regular follow ups.
They are so relieved they had their checkup.:thumbs
For those in fear of the glove puppet, it goes like this...
You lie on the bed, facing the wall, you put your knees to your chest, you drop your pants, nothing but your bum is exposed...
10 seconds later... job done, pants up, get off bed.
Sorry ladies if you are reading this, but you might be pursuaded to get your partner to get them selves checked out.:thumbs
kitchenman
16-06-2016, 19:10
Slightly different but still Big C
I was in for Gall stones, guy was admitted, story short,
He told me he had been bleeding from the bum for a few years, scared to go to doctor, hoped it was piles.
It was advanced colon cancer, prognosis, terminal.
So as Rustic says get it checked
don simon
16-06-2016, 19:33
Great post Rustic and thanks for putting it up.
I value my health and am not embarassed to go and talk to the doc about things. I've done the macho thing with sports injuries, but the dark art of the functioning of the body I won't play with. I had a prostate test 18 months ago and given the all clear.
As an ex-smoker I do have some concerns about my health and for this I do plenty of exercise (though this isn't a guarantee).
Thanks for being strong and an inspiration Rustic.
solarman216
16-06-2016, 20:50
Yes Rustic, a great post by a great man, I knew you were a fighter when I first talked to you about this issue a good while ago, and glad to see you are still around and fighting, best regards Rick & Maggs
jims-terrano
16-06-2016, 21:14
A quite amazing thread and being so very open about a subject we all should be open and honest about. Rustic I'm convinced that you are likely to have saved people by your openness. Keep fighting it buddy we are all here for you. Of course you are fighting it on two fronts as well so the very best of wishes to Roz as well.
Paultrol
16-06-2016, 23:46
A very sobering read.
My thoughts are with you.
Thank you for sharing.
Davey Boy
17-06-2016, 00:14
Thanks for making the effort of sharing this with us Rustic!
macabethiel
27-06-2016, 09:46
Well had the Fudge Test on Friday and firstly it did not hurt and my GP was very good.
It is the strangest sensation as he orbits his finger around the Prostate Gland to feel it's size. He did two circuits and told me my Prostate was enlarged and has ordered a PSI test as the first step. He went on to say the PSI test is not very reliable! I think the Gleason Test is more expensive so they go for cheap first.
Have to wait a week for the test as you can get a false reading as a result of the "Handling of the Gland".
In view of my age 68 he was not overly concerned as it was not lumpy or hard. Was chatting with my neighbour who I go for a pint with on Sundays and he had an enlarged Prostate diagnosed four years ago and it was BPH - funny he never told me before. A bloke thing I suspect.
terranosaurusdoug
27-06-2016, 12:26
:thumb2 well done fella
I am so pleased you guys are starting to discuss this with your friendship groups, it does make a difference.
I have had a few PM's thanking me for bringing this to their attention, most of those have been clear and give reassurance, don't let it stay at the back of your mind thinking, it won't happen to me, boy it really does.:eek::eek:
I am writing this at this early hour as I have been woken by pains in my chest from 3 am caused by my prostate cancer having metastased to my sternum, I have been measured up and scanned for a zap of radio therapy to that area, that with luck, will cut down on the pain. Just awaiting date.
With my wife going through breast cancer and me and my prostate cancer, our diaries are full of hospital appointments, there are still many to get planned in too. We cannot forward plan, we take each day as it comes.
This is what "Living" with prostate and breast cancer can be like.
It doesn't have to be like this.
When you get to 60, you will be sent the famous "Poo sticks" this is a check for bowel cancer.
Get checked out.... Your Choice.!
Uncle Rustic
You can always look this up on the internet, not a pleasant test by far, they take biopsies of the prostate using a long needle, it goes through the anal wall into the prostate, they take up to 6 samples from each half of the prostate, which is a bit like a wall nut, in two halves, and a similar size, the samples are sent off and depending on how much cancer they find, they then have two numbers, one for each side, if all samples are positive, then you have a gleason score of 5+5 so 10 Unfortunately mine was 5+4 =9
Scores of 1+1 =2 are no immediate concern.... yet, but need to be monitored, and possibly treated.
The test is no guarantee, they may sample 12 points and miss all possible cancer sites, that's why they take so many.
There is a risk of infection, you are going through the anal wall after all:eek: You are given strong antibiotics prior and after the test, I was ok.
Uncle Rustic
macabethiel
29-06-2016, 21:58
My Father-in-Law who has prostate cancer had the Gleason Test but when he told me about the biopsy I could not work out how they reach the Prostate via the Anus.
A very helpful explanation thanks. He is 86 and has had treatment for the last 2 and a bit years. GP has re-assured him he will die with it not from it despite it having spread a little into nearby "bits". Bones & Lymph Glands but not into his bladder.
macabethiel
03-07-2016, 22:20
Well got my result back and all is OK just old age enlargement.
I am going to seek advice if annual checks up are a good idea,
melissachels
05-07-2016, 21:41
aww rusti I admire your openness,
blokes are not good at talking about their health or concerns even with professionals.
we had a episode with cancer last year....well my partner did but testicular instead he's 42 and quite old to get this type of cancer its gererally found in blokes between 18-37 :eek:
anyway he'd had a vesetomy years ago and just thought is was a knot but it was swelling in size and then he started getting a shooting pain through it.
gp were not the best and didn't put him though for a prority scan, got the referal changed after a second opinion and me telling all the symtoms not just some of and explaining the increase in pain and frequency.
scan was given in 2 weeks, wrong diagnose given over the PHONE and not by a medical proffesional!!!! :doh
less than a week later an oncology appointment and 6 days later, a half cesarion to have the offening nut removed.
xrays, ct scans and mri's follow quarterly along with blood tests.
thankfully we're clear.
I give you all the best rustic.....you've managed to shrink them this far....keep it going!!
Thank you for the support Melissa, I am pleased your partner insisted on taking this further.
If caught early, most cancers can be cured.
Our granddaughter is called Melissa, my son and family are in Bahrain, as my son works in Saudi, on a daily commute to work over the Bahrain- Saudi cause way. We don't see as much of them as we like, they were home in May, and we expect to see them at Christmas.
Unfortunately, we are unable to travel abroad due to the excessive travel insurance, more especially as I am on "Trial" medication.
So what is this post about?
When we retired we thought we would use some of our hard earnt cash in travelling abroad, a year and a half ago, my wife had nothing more than an underactive thyroid, and I had a stiff shoulder and occasional gout to declare.
How things change,
Don't put off till tomorrow that you can do today, certainly springs to mind.
We strived to pay off the mortgage, so we would be debt free before we retired, we achieved this. We missed out on a few expensive holidays abroad, yep plenty of time for that later we thought...:doh
So look after your health, have things checked, but note, we talked to a recently qualified doctor, she said the pass rate to being qualified is 40 % yes forty...
Does that mean they get things wrong 60% of the time? Think about that at your next meeting with the doctor when he/she says there is nothing wrong.
I, over the years have had three separate doctors review my symptoms, three opportunities to check for prostate cancer.
Do I have a bitter taste about GP's? I rest my case.
Uncle Rustic
keefbeef
06-07-2016, 12:55
Not a tread you would expect to read in a 4x4 macho forum, but nevertheless a very important topic - Men's health.
I myself had a lump on my ball 8 years ago, and it was checked out. Nothing there was what the doctor said. Still there and I'm here - so all good! Recently had pain peeing, again had tests carried out to check for infection and even got the camera down the pee hole. Nothing found. Also got referred to the 'flow clinic' where you pee into a funnel, weird. They didn't think prostate was an issue as didn't have any of the other issues, such as blood, night visits to doctors or poor flow.
In this country we have a great national health service - use it!! I sometimes worry about my health since turning 40, but not scared to go to the GP. That's what they are there for, but in both my cases I was referred to the 'man in the know'. I think that's sometimes the problem is people take GPs word for it. A good GP will refer you to the experts.
Rustic, what can it say... tough story and good on you for posting! We have a saying where I come from - 'keep her lit!!' and I really really do wish you all the best!
You know I have stopped watching DIY SOS cause of stories like this... just can't get away from them!
Not been on for a while so got some catching up to do:lol but sorry to read this Rustic as I never knew you were suffering from the condition but credit to you for talking about it as cancers us males can suffer isn't really talked about, I had an op a few years ago & they put a catheter in oh god worst i'very experiencedo legs went to jelly every time I went for a pee due to the pain. My Grandad (mothers dad) had the condition & i'm sure he had an op years ago for it sadly it didn't work fully but he still made it to the grand old age of 92 & it wasn't the cancer that got him:thumbs my dad was diagnosed with it around 14 years ago luckily it was in the early stages & was treated with radiotherapy & hormones which sorted it out & he got the all clear but after that he arranged to go to hospital twice a year to have his bloods checked & there has been no sign of it returning. At 40 know in a few years will have to go & get myself checked out due to a family history of it on both sides.
Well it has been a few months since I last posted on this thread, I guess that's because the hormone treatment has been working well, and my PSA value has remained stable for many months, but around 8 weeks ago it started to rise, so the oncologist brought forward the next PSA blood test, horror, my PSA has doubled in 6 weeks. To me that implies that the hormone treatment has slowed down. The oncologist said "don't panic Mr Mainwaring" he organised another neuclearonic scan, which I had last week, and another ct scan for this Friday, to see what is going on and where.
I must admit I have more regular pain now, the cocodamol is working for now, I don't want to go back on the Morphine that I was on just over a year ago just before the hormone treatment started to work.
We have a meeting with the oncologist on 12th December, after yet another PSA test, and I will get the prognosis then. What has been suggested as the next course of action is chemotherapy, should the cancer be growing too fast in other places around my body.
As you can imagine I am an emotional and physical wreck, I am fatigued now, the treatment leaves me tired and if I continue light jobs after 4pm, I suffer that night. The side effects of Chemo are much worse again. As we don't know if this is needed, I guess I should worry about that if the time comes.
I am encouraging my wife to join local groups, she is more a people person, where as I would be quite happy pottering in my garage. Recently we moved our boat from Norfolk to the Thames at Oxford, so as we visit our daughter and grandson weekly in Oxford, it means I can visit the boat weekly too. So I have been very busy doing boat joinery and planning jobs. My wife says she has seen a different person in me, I have hope, something to look forward too, I am convinced that having a positive attitude can really help in this situation.
No doubt I will add to this thread next month.
So again guys, if you suspect that you might be at risk from prostate cancer, get yourself checked out. You really don't want to be walking my path.:doh
Uncle Rustic
jims-terrano
27-11-2016, 10:46
Hi Uncle, fingers crossed for the 12th mate.
Blocky10
27-11-2016, 12:47
Fingers crossed they can nail the b'stard down Rustic.
Thanks for your support guys, some days we cope better than others, but this morning we were walking to church, to take communion, and I realised I hadn't clipped my leg bag on, luckily a friend happened to stop and ask if we wanted a lift, that I accepted gracefully. Luckily I don't suffer from incontenence, but more a matter of urgency, which my leg bag allows me to have a life outside the home.
A lift home and a comfort visit in church and I kept my dignity.
For those interested I have an external catheter, a convene, that rolls over like a condom, with a pipe that connects to the leg bag, easy to fit and use, but yet another thing to do morning and night. :eek: If I am out and about, there is a tap at shoe level, when it looks like I am tying my shoe laces on some wet grass... The grass just gets wetter lol This has really helped.
Believe it or not, this system was not even mentioned by my oncologist, but having sourced it, I do have it on free prescriptions.
So why am I telling you?
You might know someone in my position, they might not be aware that such things exist, but I can go about my daily business without anyone knowing what my problem is. I have even got smaller upper thigh bags, that I could wear shorts, or even go swimming and still have protection, very very discreet, but single use.
Well there you go, too much information for some, but I won't apologise for that lol. :thumb2:thumb2
Uncle Rustic.
Fingers crossed for the best resulty possible Uncle Rustic :thumb2
I'm on Cocodimol at the minute for my Coschondritis and have to say I'm amazed at how effecitive it is, I'm even more amazed that you can pick it up without prescription over the counter at the Chemist :eek:
jims-terrano
27-11-2016, 13:28
I've got a friend who has just started treatment. He didn't have any of the normal symptoms just a dull ache that wouldn't go away so he went to see the doctor and the rest is history. Fingers crossed he too will be fine . It's a terrible thing indeed.
johnb5177
27-11-2016, 21:05
The greatest of good luck Uncle, thinking of you.......:thumb2
makeitfit
27-11-2016, 23:39
Hey Rustic, good wishes mate. I cant offer any magic other than to support your PMA.
I'm a strong believer in that over any Shamen :)
On a side note I've been cycling my way through November in aid of MOVEMBER and growing a stupid 'tache too :lol
I challenged myself to ride 100 miles and raise 250 quid. Just over 70 miles and £210 at the mo.
My PMA will get me over the 100 miles, I hope yours will get you your health back.
Good luck :cool:
Anybody moved by Rustic's plight, please help me to help him and the rest of us by donating here if you've a mind :bow
http://mobro.co/marinerstaches
Thanks for posting your story Rustic. The more information people get the more they learn and hopefully act on. I feel it sinks in more when it comes from a personnel experience told in layman's terms rather than from a medical expert in technical terms.
I have a very good friend who has worked in Italy for last few years. Last week he told me he had gone for a ultra sound scan to check kidney function due to high blood pressure reading. Kidneys are ok but they said his prostrate is slightly enlarged (age 55). Iam going to send him your posts to make sure he gets thorough checks.
Keep up the fight and hope results are good.
The hormone treatment and the stampede trial of additional hormones is no longer keeping my cancer at bay. The trial report is being officially logged as a failure. I have several new small tumours on my spine.
My PSA is nearly doubling every 6 weeks.
I am now finding it very difficult to walk far, pain coupled with fatigue. The worst thing is as the day goes on, I loose the ability to climb the stairs at night. I find a walking stick helps now.
I am seriously considering a stair lift believe it or not, or a room down stairs.
However, the oncologist is more hopeful, I am now going on chemotherapy. This might kill some of the cancer, and get rid of some of the chronic pain. I start treatment week after next after a review next week, and another ct scan. I will probably loose what little hair I have left, a bit upsetting as the hormone treatment has helped to bring some hair back, and it has thickened quite a lot. I will also suffer more fatigue, and will be at very high risk from minor infections, due to loss of the White blood cells. Basically even a cold could kill me. I am sorting out an overnight bag to keep in the car, and I have to monitor my temperature, any serious rise, urgent medical intravenous drugs required.
The oncologist is arranging for ocupational health to visit, look at the facilities at home and advise, and also McMillan to offer support and he suggested due to my failing mobility He would support my application for a blue badge. So he said I should contact my doctor for support, appointment arranged for friday.
I can walk 50 metres, but then I am searching for a seat for a rest. Most of this has got worse since Christmas, without intervention it will get even worse.
My neighbour has a small mobility scooter that his late mum had, needs new batteries but we'll see, we have that on standby.
I cannot believe how quickly this deterioation has happened, only three months ago I was taking stairs two at a time.
I will keep you all updated, hopefully my next post on this issue will show some progress as the chemo takes effect.
Just though I would keep you updated.
As I have said before, I don't want sympathy, the reason for the whole thread is to point out the dangers of Prostate cancer, if not caught early enough. So guys, get yourselves checked out if you have those symptoms.
Now they are pioneering the mri scan to check the prostate, a major step forward.
Uncle Rustic
makeitfit
24-01-2017, 15:18
Oh man that's such a bum deal :o
Thoughts are with you mate and I hope the chemo gets you an uplifting result .
All the best :thumbs
Oh man that's such a bum deal :o
Thoughts are with you mate and I hope the chemo gets you an uplifting result .
All the best :thumbs
Thanks, I just wonder if I can get a 4x4 mobility scooter lol...
Just joking.
:lol:lol
jims-terrano
24-01-2017, 15:55
Could you get one of those crane things to lift the scooter in
And out of your truck:thumbs
Seriously though rustic thanks for your updates and the very best of luck with your treatment.
I reckon a fair proportion of blokes on here have heeded your advice and gone to the doctors.
johnb5177
24-01-2017, 16:22
Uncle Rustic, you are in the hearts and minds of everyone on this forum.
You keep hanging in there and fighting.
I think you'll get the sympathy anyway, but also everyones respect and kindness. I am sure that if anyone is close enough, they will offer practical help if and when you require it... I know I wish I was closer and would at the drop of a hat...:nenau
It gives me great moral and emotional support when I get comments like these.:thumb2 Thank you.
When I have chemo, it is essential to monitor my body temperature, so today I bought an in ear type thermometer, so I am in effect calibrating it now, every hour or so to see what is normal when I don't feel I have a virus.
So if my temperature during chemo rises to 38 C time for action.
I was told to consider a rectal thermometer, I tried one once, for what good it was I might as well shoved it up my ar*e
:lol:lol
jims-terrano
24-01-2017, 18:02
Haha keep that sense of humour uncle, you keep posting on here and we'll give you plenty support and banter :thumbs
don simon
24-01-2017, 18:24
Bloody hell rustic! That's even more stuff to kick the crap out of!! Happy to help you kick the crap out of it!
I got rid of my old electric wheelchair rustic , or you could have had it :thumb2
solarman216
24-01-2017, 21:32
Rustic that really is poor news indeed, but do not get disheartened, do not think for one minute that you are, you are still cracking jokes, which says you are staying strong, and strong you have to be, do not let it beat you, and yes posting on here is grand stuff, if it has saved one guy by catching it early, it will have been worth it, fight on mate you can do it, Rick
Bigbunny2007
24-01-2017, 22:19
Grrrr! Cancer is such a stubborn bitch!! I hope the chemo kicks its arse!!
Keep up your fighting spirit you will beat it, as said by the others its good to hear from you and we all love reading any of your posts :thumb2
I'd like to see a few pictures of your Mav when you bought it and a now picture if you get chance or if you choose :thumb2
Thanks for the support guys, yes, if you looked at the mav pics 21 1/2 years ago, and now... it still looks the same lol.
Unfortunately I don't lol...:lol:lol
I will post some again ... in a few days.
Uncle Rustic
:thumb2
Blocky10
24-01-2017, 23:10
Yes, all the best for the best results possible Uncle Rustic :thumb2
Today after speaking to my oncology nurse this morning, I have changed the frequency of the pain killers, I am expected to maintain a constant pain killer regime to ensure the pain doesn't break through.:doh
I have never been a tablet popping person, and only take pills for chronic pain as one quick dose, then wonder why it has done nothing.
So today I am taking regular pain killers, and it is really helping.
I managed to get to the boat, walked slowly to the boat, hopped on board and checked her out, my wife and grandson came too, fan heater on, stayed maybe an hour, our grandson played with some transformer trucks that we bought for him to play on the boat.
Fantastic, one of my better days, this best this year.:thumb2 It's what I woke up for today lol
Tonight I managed the stairs better too, but this is how it can be, I have gone weeks without painkillers, then suddenly wham... flat on my back, so I will continue with the pain killers, 2 weeks to go to Chemo... 9th Feb.:thumb2
Uncle Rustic
don simon
26-01-2017, 21:48
Fantastic, one of my better days, this best this year. It's what I woke up for today lol
Good. :thumb2
johnb5177
26-01-2017, 23:43
Good stuff :thumb2
Thomas61
26-01-2017, 23:53
Good stuff, pleased to hear. :thumb2
Yesterday I had a CT scan, this will form a reference to see how effective the chemo is, as I start the 30 week treatment.
Chemo on Thursday, so today my wife and I went out for the most enormous mixed grill. :naughty
After the Chemo there are too many things that carry a high risk of infection, under cooked meats, runny eggs, shell fish of any type, mayonnaise, unless fresh... Salad that is not well washed, some soft cheeses, no takeaways like chinese, as these are often preprepared and microwaved, plus lots of others.
If I get an infection with my low white blood cell count, following chemo, then it could be game over unless I can get to hospital quickly. I have to monitor my temperature regularly, if 1degree up... straight to hospital. So my hospital bag is packed, meds, pyjamas, external catheters and leg bags, iPad charger lol...etc ...
With a low red cell count, I may loose the ability for my blood to clot, so any bleeding gums or any other bleeding could be an issue, with a quick blood transfusion.
I have a mobility scooter, lent to me by a neighbour, it needs new batteries, so I will test that when I can.
I now have a blue badge, I applied last Sunday and I had it by the following Saturday. Bliss... I can now walk around the shop a bit now, rather than walking to the shop and giving up.
I will keep in touch as things progress.
Uncle Rustic:thumb2
johnb5177
07-02-2017, 20:30
Be strong Uncle........respect...:bow:bow:bow
Blocky10
07-02-2017, 20:37
Seems you have everything under control uncle rustic. :thumb2
jims-terrano
07-02-2017, 21:18
We are always here for you Rustic :thumbs
In the treatment centre they have internet, and ipads to lend, so if on Thursday afternoon you see my helping out, you'll know where I'll be lol.:thumb2
macabethiel
07-02-2017, 22:14
As some here know I had Stage 2 Hodgkin's Disease (HD) back in 1987, I had the initial 6 months of Chemotherapy - a mix of drugs including one named Vincristin.
TBH the treatment did make me very sick for quite prolonged periods. After the end of the course I elected for a new Trial. This Trial was basically a further 6 month course of the Same Chemotherapy drugs but at half dose. The idea was that as regression is quite common with HD they thought an extended half dose course would help stop any relapses.
I was clear by April 1988 and for the next year was on 3 monthly, increasing to 4 monthly check ups. By August 1989 I was on 6 month check ups and my life had returned to normal.
I went for my second 6 month check up in February 1990 only to be told the HD had returned found by a routine X-ray and CT Scan follow up. As you can imagine my wife and I were devastated. I underwent another 6 month course of Chemotherapy followed by a month of Radiation treatment to my Chest area.
The treatment I had in 1990 had little resemblance to the terrible side effects I suffered with Vincristin that I will not go into here. I was admitted as a day patient at 9.00 am onto a ward and given an anti-convulsion injection just prior to my discharge usually at around 9.00 pm. I then had the District Nurse visit me at home around midnight for another jab with the offer if needed of one the following morning.
The improvement in treatment between 1987 and 1990 was astounding. I know they now use even better drugs, most Hospitals now have a dedicated suite for Chemotherapy.
I dropped onto 3 monthly check ups for a year then 4 monthly, then 6 monthly until it reached 12 monthly check ups only. In 2009 they discharged me completely.
Whist all Chemotherapy Drugs have side effects the reduction in nausea in particular has been a huge leap forward. I mention all this as many people have seen the old 1983 film "Champion" with John Hurt playing Bob Champion a film that depicted Chemotherapy as it was then not as it is now.
I was fortunate that the only real side effect I now remember of the later treatment was feeling incredibly tired due to low blood count and sleeping a lot.
I am not saying it's an easy journey but as my Oncologist told me back in 1987 the Cure is wonderful but the treatment less so.
I owe my life to the NHS, Dr Golding (Consultant Oncologist) and Dr Guthrie (Consultant Radiologist) of the old DRI in Derby both of whom have now retired.
solarman216
07-02-2017, 22:33
I am so very glad that I have not had any bad issues with my health, both of you are fighters with strength, not sure I could put up with what you both have, Rick
You know Ted, your posts and PM's have been the most inspiring, and thanks to all the other members for your support too, you have all given me hope. The encologist expects there will be an improvement.
The problem I have is the cancer has spread to a lot of places around my body, it's the pressure of the cancer at various sites on my spine that seems to be taking my mobility away. He thinks that the treatment will kill a lot of the cancer cells, with there being so many areas, it is the best option.
With cancer, the longer you live, the greater chance of an alternative treatment.
I know my oncologist will be zapping (radiology) a few more sites on my spine, but wants to see what the chemo does first.
I've not wanted to drive our every day motor (yeti) for over a month now, and my Maverick hasn't been driven for over 4 months, heavier steering than the yeti, it pulls on my chest too much.
I am confident that the treatment on Thursday onwards will be successful.
I am concerned about the additional fatigue, as I might have to get a stair lift if it gets any worse.
Do Nissan to a 4x4 mobility scooter? :augie
Uncle Rustic
I am so very glad that I have not had any bad issues with my health, both of you are fighters with strength, not sure I could put up with what you both have, Rick
It's amazing what the body can do to fight infections and diseases, but the most important part is having a strong and determined mind. The will to live, to still make a difference. Yes there are times when I wanted to give up, there are members here that have listened to me with sincerity, sometimes at 2:00 am as various thoughts went through my mind.
I am absolutely positive that you Rick would be a fighter like us too. :thumb2
emjaybee
08-02-2017, 00:20
Bloke, we are ALWAYS thinking of you, ALWAYS rooting for you and ALWAYS impressed by your frankness and bravery.
Hang on in there.
:thumbs
johnb5177
08-02-2017, 12:58
+1....:thumb2
Thomas61
08-02-2017, 13:36
Bloke, we are ALWAYS thinking of you, ALWAYS rooting for you and ALWAYS impressed by your frankness and bravery.
Hang on in there.
:thumbs
+2
Absolutely spot on wording my friend.
The Patrolman
08-02-2017, 23:21
Powerful reading, so many have not been so blessed...Keep strong fella....!
don simon
09-02-2017, 01:20
Uncle Rustic is awesome and if you think differently I'll come and tweak your nipples or kick you in the goolies. OK? :thumb2
I was due to have Chemo today but has it all gone pear shaped... Had poos on way home from our daughters yesterday, stopped at 3 service stations, was there over hour and half at each Blood in stools etc Bin liner on front car seat... And needed it lol last night we were on the phone to check nurses out of hours docs till 3:00 am this morning... Nearly a blue lights job... Anyway cause we think is the medication Naproxyn that the doc prescribed last week and insisted I take them as prescribed, I was reluctant but hey ho... When I read possible side effects, blood in stools was one, and also I had pins and needles in my right foot, both also symptoms of Spinal cord compression, which is a straight to surgery job.
Just had call from chemo suite, treatment delayed a week I was looking forward to starting a future with a better quality of life. :doh
Doctors... what do they know ? In fact they only need to get 40% to pass to become a doctor, which means they could be wrong 60% of the time. :eek::eek:
Uncle Rustic.
:thumb2
emjaybee
09-02-2017, 12:15
Naproxyn, yup, know all about that. Spent 4hours in A & E with the wife after she had been prescribed them for a slipped disc.
Scared the crap out of us, consultant said that the Gp should have also prescribed something else (can't remember name) which helps the stomach etc cope with the Naproxyn.
Chin up bloke.
Naproxyn, yup, know all about that. Spent 4hours in A & E with the wife after she had been prescribed them for a slipped disc.
Scared the crap out of us, consultant said that the Gp should have also prescribed something else (can't remember name) which helps the stomach etc cope with the Naproxyn.
Chin up bloke.
Yes I was prescribed omaprazole to settle the stomach, taken at same time.:thumb2
johnb5177
09-02-2017, 13:00
Be strong, we know you can do it....:grouphug:grouphug
Be strong, we know you can do it....:grouphug:grouphug
You know... just when you see the light at the end of the tunnel...
you know the rest lol...
I was quite happy for the few days before, I thought things can only get better, but my wife and I were talking about this just now... What if the "condition" happened only a day or more later? they would have put the condition down to the chemo, as it's one of the possible side effects, so they would have stopped chemo there and then, and I'd still be taking the Naproxyn, making it worse again.
So looking on the bright side, which I try to do, then this was probably a blessing in disguise. :bow
Uncle Rustic
emjaybee
09-02-2017, 13:23
Yes I was prescribed omaprazole to settle the stomach, taken at same time.:thumb2
That's the stuff. Seems they forgot to prescribe that for my wife, with some proper scary consequences!
:doh
johnb5177
09-02-2017, 13:51
You know... just when you see the light at the end of the tunnel...
you know the rest lol...
Uncle Rustic
When I had to tolerate 'Land Agents' in my last job, we would say that just as you were seeing the light at the end of the tunnel.......they would add more tunnel.....:nenau
emjaybee
09-02-2017, 14:15
When I had to tolerate 'Land Agents' in my last job, we would say that just as you were seeing the light at the end of the tunnel.......they would add more tunnel.....:nenau
On our office wall, when I worked in Building Services, we had,
"It's not the light at the end of the tunnel...
...it's some b*****d with a torch bringing more work!"
:cool:
Barrbeast
09-02-2017, 14:32
Rustic, can't imagine what you're going through but the strength and positivity you show is amazing.
Thoughts are with you mate.
macabethiel
09-02-2017, 20:12
Strangely enough my wife was prescribed Naproxyn about two years ago for pain relief for stomach adhesion's due to "womens" surgery decades ago.
Anyway after being on the drug for about 4 months she started to experience quite serious bowel pain and bouts of vomiting plus having issues with her balance and general wellness.
Ended up having the old camera on a flexi-pipe down her throat and similar with endoscopy, Barium meal and some scans. Finally having to have a narrow tube inserted in her stomach via her nose to monitor her acid production over a 24 hour period at home with a recorder attached to the wires inside the tube.
In the end an extended course of Lansoprazole and other drugs were needed to fix her all this being attributed to having taken Naproxyn.
I am pleased between us we have highlighted the issues with Naproxen, I hope other members can recall this in the future, if they or their family and friends have to deal with some of the side effects.
I didn't realise till today the issues with the drug.
Thanks guys for spending the time to reply to this aspect of the thread, and to all those that have supported me at this time. :thumb2
Uncle Rustic
:thumb2
Monaro Pete
09-02-2017, 21:49
All the best fella.
Keep fighting & stay strong :thumb2 :thumb2
terranosaurusdoug
09-02-2017, 21:50
I feel lucky or like I'm getting away with something!!
Hi guys, for those of you who might be interested, my third chemo is due on Thursday. This current session has been a difficult time. I was knocked off my feet for the first week, literally confined to bed, they say second and subsequent sessions get worse, as the toxins build up. Then the vaccine drug I was taking (1 per day for 5 days) to increase white blood cells started it's side effects with excruciating pains in the lower back. An emergency trip to hospital and a reduction in the number of vaccines helped to sort that. When they say on a scale of 1-10 what the pain is, I think I have found what 10 is now.:doh
However, last Sunday, (I had picked up a cold earlier in the week,) I was confronted with a chesty cough. A call to the chemo emergency number and off to A&E for an emergency intravenous antibiotic infusion. We were expected at the busy A&E and on arrival we were immediately directed to a side ward and treatment started within 15 minutes. More culture blood tests, white cell count. I was discharged later in the day, with my pack of antibiotics. The cold, not man flu lol, took out my second week, so mostly restricted me to stay at home.
So the next few days I have to do those jobs that must be done without tiring my self out. I am keeping a diary of my feelings and reactions to the treatment, If next session is as bad or worse than this one, taking me out for two out of the three weeks, then the quality of life is being affected. This session was compounded by the vaccine side effects and the infection I picked up.
It is early days yet to make any decisions about future treatment, or the benefits, if any, that the chemo is providing. No doubt a ct scan in the future may show that the tumours have shrunk and the treatment is working. :thumb2
Yesterday I serviced the lawn mower, new oil, clean air filter etc during this next session, I have to prep the Mav for it's mot. It has done very little since last year, and one casualty was the rear screen washer pump had seized. New one to arrive shortly. I should have ran the pumps once a month lol.The engine started first time, in 6 weeks lol, not bad for a 22 year old. It is kept in a warm dry garage though, and battery kept on charge.
The biggest problem we have is not being able to book or plan anything, when we arrange for family to visit, we have to confirm on the morning, even then, we had to rearrange one visit, last week, as they were travelling an hour from Cheshire as we were travelling 45 minutes to A&E
Heyho... as they say, one good week out of three is better than non at all.
Uncle Rustic
Blocky10
25-03-2017, 06:54
An awful business rustic and you're not giving in, which is commendable. We need these updates too so we know what's happening.
All the best. :thumb2
terranosaurusdoug
25-03-2017, 08:02
To have the spirit left to service your mower after all that is a show of strength rustic, I was genuinely surprised when I read it :bow I have been thinking about you actually :thumbs, check out this post I'd love to see what you have to say. http://www.nissan4x4ownersclub.com/forum/showthread.php?t=28195
johnb5177
25-03-2017, 09:29
Such inner strength and resilience is humbling, you are our top man......:thumb2
Stay strong......:D
emjaybee
25-03-2017, 10:49
Never forget we're always rooting for you, and often thinking of you.
Hang on in there bloke.
:thumb2
solarman216
25-03-2017, 19:50
You keep going there Rustic you can do it, Rick
To have the spirit left to service your mower after all that is a show of strength rustic, I was genuinely surprised when I read it :bow I have been thinking about you actually :thumbs, check out this post I'd love to see what you have to say. http://www.nissan4x4ownersclub.com/forum/showthread.php?t=28195
I can't go that far back with car manuals but I do have the 1995 sales brochures for the Ford Maverick and Nissan Terrano.
Personally I think these should be scanned and stored in a seperate area of the forum, copyright permitting :augie lol and not just stuck in a thread, lost and never to be seen again. Any ideas :nenau
Uncle Rustic :thumb2
don simon
25-03-2017, 20:55
Uncle Rustic is ACE!
That is a fact and can be used as such.
terranosaurusdoug
26-03-2017, 02:06
I can't go that far back with car manuals but I do have the 1995 sales brochures for the Ford Maverick and Nissan Terrano.
Personally I think these should be scanned and stored in a seperate area of the forum, copyright permitting :augie lol and not just stuck in a thread, lost and never to be seen again. Any ideas :nenau
Uncle Rustic :thumb2
I think you're onto something, I for one would be interested in seeing the brochures you have!!
Hi guys, some of you have PM'd me, wondering why I have not been as active of late.
Well yesterday was chemo 5 (out of 10) day. This previous session has been really a life changing situation.
I have not been confined to bed, I have not had an urgent return to hospital.:thumb2
I have achieved quite a lot too. I went to communion last week, first time in a couple of months through fear of cross infection. I went on my mobility scooter and the vicar arranged my own seperate communion chalice, as I expressed a risk of cross infection. I felt like a King.
Last week we have slept on the boat on 7 consecutive nights, first in nearly 2 years, we have cruised beyond Oxford on the Thames, and stopped over on wild moorings and visited a riverside pub, and had a great meal. Even meals have risks, no soft eggs, no undercooked meat, and only really fresh mayonaise, and salad only if well washed... well as if, so that's off the menu too lol.
Another day, my daughter, son in law and grandson Bob joined us at a pub, we had yet another meal, and we went for a cruise. Bob was thrilled to show Mummy and Daddy where we store shoes etc and how to use the loo lol he's only three.
Before we cruised, the honda 15 outboard was running rough, so oil change, new plugs, and most important, a carburettor strip and clean, this was the main culprit. Now running really sweet. I love the old technology, proper jets and mixture screws and float chambers lol I can do a carburettor clean and strip blind folded, but lack of use for nearly two years has taken it's toll, but all fine now. When I do work, I do aout half an hour, then rest up for the same and continue, I find if I overdo it, then I am flat on my back for a day:confused:
I had an engineering issue with my night bag, sleeping in a "V" berth means there is no floor access to the side to help gravity, so next day... out came the drill, bag now under the bed locker, not ideal... but worked well. I now have a fixed solution ready to install. Being tethered to the boat via a pipe on your tackle can have consequences lol. :eek::eek: It was this issue that prevented us sleeping over on the boat before, but we though we have to get a life so get over the problem. Had we had a disaster, our daughter lives only 15 minutes away, and the first few nights were on the mooring with the car only yards away.
What I did find is that my mobility is severely affected, the secondary tumours on my spine make stepping off a moving rear cockpit boat wIth narrow side decks and no handholds a big issue, especially with a strong off shore wind, this could be a show stopper. :doh
The engineer in me took hold of the problem, and I think I have an engineering solution. :thumb2 I have a pair of "anodised aluminium gangway stanchion sockets" on their way to me. This was the cheapest bracket I could find that would take a broom handle. So one mounted on the outside of each cockpit side with a short broom handle should provide a light hand hold to steady me, and young Bob, when we go ashore. Normally the wooden broom handles will be stowed within reach, and still allow the canopy to fold etc even if still deployed.
The manned locks on the Thames are something else, we barely got along side the quay heading before the lock, and the gates opened, in we went, we lassoed a couple of bollards, or the keeper would do this for us, and very soon we were cruising the next section.
My wife just loves the wide open boat free sections, we often cruised upto an hour before seeing another boat, then she made a profound statement... "This is not second best after all is it?" Something I thought I would never agree with, but she was right. Having moved the boat from the Norfolk Broads last November. We are both looking forward to returning to the boat next week.
We did see a few hire boats, mostly steel narrow boats, all four we encountered were practicing how to get off a shallow mud bank using full power in reverse gear and pushing off with the barge pole. There are two important must have items on the Thames, Large diameter fenders, as there are few formal quay headings, and public moorings can be just a row of submerged bags of cement / concrete laid in a brick pattern. Worked well for us. the second item is a depth sounder, the river looks wide in the upper reaches of the Thames, but only the middle third has more than 2' lol demonstrated by the hire boats, but to be fair, the water is crystal clear and you can see the water lettuce and the gravelly bottom, so no excuses really.
On the Broads we were ofen woken up by the boom of the bitterns, not so on the Thames, at 6:30 am on some mornings, we were often woken up by the Oxford university boat crews of 8 doing their early morning practice, with a mentor in an outboard powered skiff with a megaphone giving them instructions. Hey ho... we are boating, we just need to get used to the Thames way of life, and so far we are really enjoying it.
Well this overview has been more about what we have achieved, rather than the condition, and we certainly want to do more as time goes on.
However, fatigue and tiredness is still a major problem, I just have to do less, but with long rests in between, I overcome the challenges as they are presented, to us, also part of the enjoyment of boating.
The chemo is palliative care, it is not a cure, it is intended to give a better quality of life, hopefully extending it too, with less pain, of which it is, well at least it is now. Without it I was going down hill fast. Personally I think I have gained a summer now, and the cost of moving the boat to Oxford has been well justified with the benefit of babysitting our grandson most weeks lol. The oncologist has further options up his sleeve, and I firmly believe if I hadn't volunteered to go on a medical trial, all these options wouldn't have been available to me and I don't think I would be here now. Things were really dire before the chemo, I have had a few midnight discussions with fellow members on how I really felt regarding treatment, I am grateful for their advice.
As you can see, I have a more positive attitude to life, the quality of life is the best it's been in around 18 months, and I certainly will make the most of it.:thumb2:thumb2
Very best regards,
Uncle Rustic
Blocky10
12-05-2017, 08:29
A great addition to the thread rustic. :thumb2 glad you are coping the best you can and overcoming the obstacles as and when you are able to. :)
don simon
12-05-2017, 08:53
Good to hear that there is in improvement in the quality of life. :thumb2
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
12-05-2017, 09:14
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
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. :thumb2
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
12-05-2017, 10:20
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. :thumb2
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
12-05-2017, 12:09
What was it that Ratty said........"There is nothing quite like messing about in boats..."
johnb5177
12-05-2017, 12:20
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.......:thumb2:thumb2:thumb2
jims-terrano
12-05-2017, 18:04
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
12-05-2017, 23:23
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
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.:eek:
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.:thumb2
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, :eek: 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.:clap
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.:thumb2
We will keep in touch,
Richard and Roz
:thumb2
Blocky10
13-07-2017, 07:37
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
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.:confused:
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
13-07-2017, 08:16
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
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
13-07-2017, 08:48
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.
http://www.fluffyferretforum.co.uk/forum/Smileys/Ferret%20Smileys/ferret_hug.gif
macabethiel
13-07-2017, 09:04
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
13-07-2017, 09:57
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
...
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
13-07-2017, 15:12
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!
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
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. :eek::eek:
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
02-08-2017, 23:11
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
02-08-2017, 23:15
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
02-08-2017, 23:24
I have sent you a PM Wendy & I are devastated with the latest news from you & Roz.
Ted & Wendy
Blocky10
03-08-2017, 00:44
That's shit news Uncle Rustic. Best you get out and put some miles on the mav asap.
Love to the family :thumbs
The reality of seeing the scans, seeing where the cancer has spread to, is devastating. :confused:
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. :confused: 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. :eek:
I apologise to you all for venting my feelings this way, I might feel differently in a few days.
Uncle Rustic.
don simon
03-08-2017, 08:54
You're an inspiration Uncle Rustic.
jims-terrano
03-08-2017, 10:41
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
03-08-2017, 19:50
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
03-08-2017, 22:31
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
05-08-2017, 00:42
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 .
Thomas61
08-08-2017, 08:46
Your strength, courage, wit and wisdom have never failed to impress and inspire me. We live forever in the memories of those we leave behind. Get that pain management sorted and carry on adding to those memories. Fight the low days live like a king and enjoy your time.
Take care
Dear Rustic - inspiring and thank you for sharing your story. Your strength made big ripples in my mind:bow I'm sincerely respecting your courage and support. (Apologies for my late post on this thread)
Dear Rustic - inspiring and thank you for sharing your story. Your strength made big ripples in my mind:bow I'm sincerely respecting your courage and support. (Apologies for my late post on this thread)
Thank you for all of your support, I will give a short resume as to what I have had to face during the last 3 weeks a bit later.
There are no late threads on this topic, just a regular reminder to trigger regular visits to the doctor, should you have the symptoms. :thumb2
Best regards,
Uncke Rustic.
In the past, I have been giving you updates, usually on the eve of the next chemo, well as most of you know, chemo was stopped 8th out of 10 (3aug) and it has been a downhill challenge ever since. PSA rising. need to increase morphine, and slow release morphine. Which on 3 Aug was 40 mg morning and night.
Had a week of fairly good days, a few boat stopovers and valuable time with our grandson.
Aug 18 son and family arrived from Bahrain, for 2 weeks stop over.
18 Aug slow release still 40 mg.
22 Aug... pain relief had to be increased to 50 mg.
25 Aug hip pain increasing
27 Aug tripped twice, bit of a wobble
1st Sept wobbly, tripped and broken humus left upper arm, just at the point where my shoulder transplant was fitted 2.5 years ago... bruised head badly and big bruise on right hip.
2nd Sept despite the broken arm, my wife drove me and the Maverick to the Rustic's road trip on Cannock Chase.
5th Sept slow release now 60 mg, vomited 4 times, now 4 days after fall called doctor... Ambulance straight to hospital, could be blood clot, immediate ct scan and xray to affected areas. All clear.
11 th Sept hip pain now extreme. Go to hospital had mri scan whole spine, not easy trussed up like an oven ready turkey for 1 hr 40 min, with a broken left arm wedged across my chest. slow release now 80 mg. kept in hospital to monitor.
14th Sept still in hospital, now had bone specialist brace my broken arm with a splint type brace. slow release now 120 mg Severe pain in left calf, leg etc pain killers extra morphine no effect at all. Now prescribed some muscle relaxant, to dissolve under tongue, seemed to work as a quick fix
They seem to think it might be a trapped nerve being compressed by the growing cancer.
19th Sept same situation, but slow release increased to 150 mg
21th Sept woke in complete agony, took muscle relaxant, requested a home visit by Hospice nurse to discuss pain relief, and why in less than a month it has gone up from 40mg to 150mg. Hospice nurse prescribed some pregabalin,
22nd Sept Woke up this morning, not too bad so far...
So today is exactly 3 weeks since I broke my arm, I hope in the next two weeks Or so I can start a few light dutes, but most importantly to get to see my grandson this Sunday in Oxford.. his 4th birthday.
If I can reduce the slow release and liquid morphine, then I might start to get some quality of life back again.
I think the diagnosis has been misread, as 4 different departments are involved, fractures, oncology, palliative care, linked with the hospice and our local GP .
One does their bit..... My bit works... and passes it on , with no one other than my wife Roz and I facilitating the meetings.
We have found out today that the cause of the pain in the spine is 'likely' to be Neuropathic pain caused by nerve root compression.
Uncle Rustic
Richard
don simon
22-09-2017, 17:22
Glad to hear that things are picking up after the downward blip.
We'll need that £350m per week that Boris promised us at this rate!
Keep fighting the fight. :thumb2
jims-terrano
22-09-2017, 19:37
Hi Rustic, keep fighting it fella. We are all here for you.
solarman216
22-09-2017, 21:09
Richard I know what a traped nerve can do, I had a similar situation some years ago, saw specialists etc and was offerd an op to "fuse my spine" I told him impolitely to FO, so he suggested phydio which I accepted cos at least I will not have to pay for it which I had been doing so for many months with many different specialist that all said they could sort it but none did, I remember going to a mates wedding and being in severe pain downd a bottle of scotch but in the end had to leave early as was in tears with the pain and could barely walk, well to cut a long story short the NHS physio sorted me in two weeks with some very simple exercises, from my posture and a few simple tests as to how far I could move my limbs she pinpointed the problem and as I say two weeks later I was as I am now, I am not suggesting the same for you as clearly your cancer is responsible for the nerve pressure, but and it is a big but it may be worth a physio looking at you to see if the site of the pressure can be located and if so can anything be done to relieve it, regards Rick
makeitfit
25-09-2017, 09:07
Following on from Rick' s comment I'd be looking for a chiropractor. I've hurt my back so many times at work and play ( yeah I know , I should have learned by now lol ) . It's always been worth a few Bob for the relief. Recently my son hurt his back taking a head off an engine. He twisted under the bonnet with the head in front of him 😑 He's a strapping lad and was reduced to tears on his knees almost. I took him to my chiropractor for emergency session. I could see the muscle group all swollen and it was rock hard in spasm. After 20 mins of muscle relaxant work and deep massage
He was a new man. I was 40 pounds lighter too, so win win :lol
Following on from Rick' s comment I'd be looking for a chiropractor. I've hurt my back so many times at work and play ( yeah I know , I should have learned by now lol ) . It's always been worth a few Bob for the relief. Recently my son hurt his back taking a head off an engine. He twisted under the bonnet with the head in front of him 😑 He's a strapping lad and was reduced to tears on his knees almost. I took him to my chiropractor for emergency session. I could see the muscle group all swollen and it was rock hard in spasm. After 20 mins of muscle relaxant work and deep massage
He was a new man. I was 40 pounds lighter too, so win win :lol
I'd have just hit the vase and walked it off :naughty :lol
Have you considered herbal relief Rustic?
Wow, what some great advice you guys are giving. I feel as though I am at a transition of finding out that there are several pain generating sites around the my body. Yesterday we went to see my grandson in Oxford, a 2 hour drive each way, and during the whole day I did not take any additional pain killers. I was close at bed time, but with the nerve sensitivity medication, pregabalin, it appeared to help a lol.
Richard I know what a traped nerve can do, I had a similar situation some years ago, saw specialists etc and was offerd an op to "fuse my spine" I told him impolitely to FO, so he suggested phydio which I accepted cos at least I will not have to pay for it which I had been doing so for many months with many different specialist that all said they could sort it but none did, I remember going to a mates wedding and being in severe pain downd a bottle of scotch but in the end had to leave early as was in tears with the pain and could barely walk, well to cut a long story short the NHS physio sorted me in two weeks with some very simple exercises, from my posture and a few simple tests as to how far I could move my limbs she pinpointed the problem and as I say two weeks later I was as I am now, I am not suggesting the same for you as clearly your cancer is responsible for the nerve pressure, but and it is a big but it may be worth a physio looking at you to see if the site of the pressure can be located and if so can anything be done to relieve it, regards Rick
Wow rick, what you say makes sense, it's as if we are at a new starting point. I certainly have been in tears with the pain. I have several specialists looking at different issues, yes the cancer is the cause. It's the breakout issues that need sorting too.
Following on from Rick' s comment I'd be looking for a chiropractor. I've hurt my back so many times at work and play ( yeah I know , I should have learned by now lol ) . It's always been worth a few Bob for the relief. Recently my son hurt his back taking a head off an engine. He twisted under the bonnet with the head in front of him �� He's a strapping lad and was reduced to tears on his knees almost. I took him to my chiropractor for emergency session. I could see the muscle group all swollen and it was rock hard in spasm. After 20 mins of muscle relaxant work and deep massage
He was a new man. I was 40 pounds lighter too, so win win :lol
I might consider this as well as physio, after consultation with my specialists.
My daughter in law has used a chiropractor in Sutton Coldfield.
I am having difficulty walking in a straight line and I am very wobbly, so I need to work on this, and physio should help.
I'd have just hit the vase and walked it off :naughty :lol
Have you considered herbal relief Rustic?
Not tried that yet, although in the deep past I have used St Johns Wart, which is a no no with certain drugs, and I am taking so many different tablets, I'm not even certain if the drugs I am taking are compatible with each other.
I am very tempted to discuss my drugs with my pharmacist, we are on first name terms lol.
Well this afternoon my hospice nurse is coming, I will discuss these isseues with her.
Thank you so much for all your support.
Best regards, Rustic
makeitfit
25-09-2017, 11:59
I think Banshee is on about this http://www.m.webmd.com/a-to-z-guides/medical-marijuana-faq
Worth a read and anecdotally hits the spot :splif
I think Banshee is on about this http://www.m.webmd.com/a-to-z-guides/medical-marijuana-faq
Worth a read and anecdotally hits the spot :splif
:cool: :thumbs
jims-terrano
26-11-2017, 16:14
Hi guys, I’ve had a quick email from Uncle Rustic.
Here I am in hospital, McMillan ward, currently waiting for my wife. Things are not that good, we are changing medication, I have been here nearly two weeks and probably likely to be here for another week or so. My son and family are visiting for Christmas, from Bahrain, and my daughter for just Christmas day and Boxing day, hope to be home for a spell by then.
As the week goes on I will let you know some details as my brain starts to kick back in lol.
If you want to share with tge forum, then please do.
Best regards,
Richard and Roz.
Blocky10
26-11-2017, 17:05
Thoughts are with you and yours Rustic. You've battled through some bad times, make sure you do the same again.
:pep
don simon
26-11-2017, 17:50
Keep fighting the fight.
johnb5177
26-11-2017, 21:13
+1......:thumb2
solarman216
26-11-2017, 23:13
Hold your head high Rustic, and keep up the fight, Rick
makeitfit
27-11-2017, 18:01
Cancer stinks don't it :o
All the best Rustic, I'm peddling for you boss :thumbs
I sincerely hope you make it home for your Crimbo gathering.
Pete
Well this is me....
Two weeks ago I was admitted to the MacMillan Ward in Derby Hospital, I did not know what day it was. Two weeks of complete confusion. Apparantly I had a fall against a sink in the bathroom here in one of the wards, and completely shattered it with my head. They have never seen anything like it. Not a mark on my head, but the basin was toast. They did a scan and found no immediate damage to me.
So here I stay on a bed with out being able to move without a carer supervising me.
Partially paralysed which might be down in part to spinal cord compression.
I have also changed medication, and it is hoped that I might be in a position that I might be able to stand up. Walking or moving at this stage is not an option, My bodily functions are in the hands of the carers. In 62 years never had to ask or take care of my functions before, but to be fair, .... I have not crossed that barrier before.
I am hoping to make it home for Christmas, my son wife and grandaughter are hoping to be home from Bahrain for Christmas. My daughter and husband and grandson too.
Things are not that great, prognosis is actually unknown, but I have so many little project jobs that would like to do.:confused:
I will try to keep you informed as time goes on.
With the greatest of respect, I thank all the members who made it to the Uncle Rustic Road trip. It was great meeting you all.
Uncle Rustic:bow:bow
jims-terrano
29-11-2017, 21:30
We are all thinking of you Rustic and fingers crossed you will see your family at Christmas and beyond. Let the new meds kick in for you.
As for the road trip it was a pleasure and so nice to meet both yourself and Roz. Plus you brought alcohol which is always good:lol but even better to sit down and have a natter with friends.
solarman216
29-11-2017, 21:35
Hang in there Richard, continue to think positive, you know you can do it, you need to be home for Xmas, thinking of you and yours, regards Rick & Maggs
Oh Fordy
29-11-2017, 22:27
Infrequent visitor to this site and just found this thread. I just had to read every word from start to finish.
Not very good with words but what a strong and courageous man you are Rustic.:clap
don simon
29-11-2017, 22:36
Infrequent visitor to this site and just found this thread. I just had to read every word from start to finish.
Not very good with words but what a strong and courageous man you are Rustic.:clap
Strong enough to break the sodding basin! :lol
It'll be good to have the family around at Christmas, so have a good 'un Uncle Rustic (and family). :thumb2
Richard, I have to shamefully admit I have only just caught up with this thread.
Keep us all updated and before you know it you will be home for Christmas.
Stay positive and never underestimate the power of the mind. You CAN beat this if you stay focused..... you're doing a fantastic job so far.
x
PS just noticed there are only 3 days between when you and I joined this site, just over 10 years ago now.
johnb5177
30-11-2017, 13:22
Rustic, you're the man.......stay strong, be loved.......we are all behind you mate.....:thumb2
makeitfit
01-12-2017, 01:37
Richard, I have to shamefully admit I have only just caught up with this thread.
Keep us all updated and before you know it you will be home for Christmas.
Stay positive and never underestimate the power of the mind. You CAN beat this if you stay focused..... you're doing a fantastic job so far.
x
PS just noticed there are only 3 days between when you and I joined this site, just over 10 years ago now.
Hey now then, how about a club donation to my Movember 1000 mile bike challenge.
https://mobro.co/marinerstaches?mc=1
jims-terrano
25-02-2018, 19:34
Hi guy’s I nipped in to see Rustic yesterday whilst on my way to the meet.
Unfortunately after a few good days Rustic wasn’t very well yesterday. I won’t go into details though. That said I spoke to uncle and he sends regards to everyone and he described this club as very supportive. He soon got tired so I didn’t stay long but managed to pass on a few messages to him which he appreciated guys.
Rustics family are expecting a grandchild very shortly which has given Rustic something to focus on.
I had a chat with Roz and told her that if we can do anything at all for the, to just ask and I’m sure we as a club will be there for them.
I’m not going to say anymore and I dearly hope Rustic can update this thread himself.
All I can say is our thoughts are with you Uncle and you have our respect friend.
Lazy-Ferret
25-02-2018, 20:31
Thanks for the update Jim, it would be nice to hear from him again, although I can understand that this thread may be too painful.
Thomas61
25-02-2018, 22:57
Thank you for the update Jim, and absolutely yes, as a member of this fine club if there was anything I could do for Rustic or his family I would be more than happy to do so.
macabethiel
25-02-2018, 23:30
So sad to hear about Uncle Rustic it's giving me a glimpse as to what I can expect with my Father-in-Law who has had been treated for Prostate Cancer for the last 4 years.
He is 86 this year but due to a bad reaction to his new Palliative Chemotherapy that started in January 2018 they are no longer offering this treatment.
He now has great difficulty in just standing up his situation does not look good. At present my wife and her brother are doing the caring but soon he will need home help that at present he is refusing.
Makes me count my blessings my thoughts are with Rustic, Roz and his family at this difficult time.
Blocky10
26-02-2018, 08:06
Yes, thanks for the update Jim.
Never too far from our thoughts Rustic.
Hi guy’s I nipped in to see Rustic yesterday whilst on my way to the meet....
Many thanks for the update Jim :thumb2
johnb5177
26-02-2018, 18:44
Yes, thank you for the update........well done Uncle....:bow
i am new here but have just read through all of this. You sir are a brave and inspiring man. I've been booked in for a couple of weeks for a check on mine, just to make sure.
I don't know you but i really hope to read some more on here from you.
i am new here but have just read through all of this. You sir are a brave and inspiring man. I've been booked in for a couple of weeks for a check on mine, just to make sure.
I don't know you but i really hope to read some more on here from you.
Told you we were family :thumb2
solarman216
27-02-2018, 22:10
Met Richard in person and what an inspiring man he is, Rick
Told you we were family :thumb2
:thumb2:thumb2:thumb2
Had my check this morning all good. This thread has made me think about a lot health related things. I'm not the most slender of people so i have been referred by my doctor to an exercise program for people suffering certain health problems and chubbyness. I was reading that being overweight is the second most cause of cancer, so time to do something about it. It's not until you read something like this that you think it could never happen to you.
don simon
28-02-2018, 18:06
:thumb2:thumb2:thumb2
Had my check this morning all good. This thread has made me think about a lot health related things. I'm not the most slender of people so i have been referred by my doctor to an exercise program for people suffering certain health problems and chubbyness. I was reading that being overweight is the second most cause of cancer, so time to do something about it. It's not until you read something like this that you think it could never happen to you.
You'll get more mileage out of improving your diet if it's pounds of fat that you need to shift. Excercise will help improve fitness unless you're looking at HIIT (High intensity interval traing) where you'll need a certain level of fitness already.
Pretty much in this order:
Quit the booze.
Quit the sugar.
Quit processed food.
Replace rice and pasta with beans and legumes.
And yes, Rustic is a bloody good egg.
You'll get more mileage out of improving your diet if it's pounds of fat that you need to shift. Excercise will help improve fitness unless you're looking at HIIT (High intensity interval traing) where you'll need a certain level of fitness already.
Pretty much in this order:
Quit the booze.
Quit the sugar.
Quit processed food.
Replace rice and pasta with beans and legumes.
And yes, Rustic is a bloody good egg.
You forgot plenty :splif :splif
don simon
28-02-2018, 18:39
You forgot plenty :splif :splif
Sends me to sleep mate...
jims-terrano
08-03-2018, 02:31
Just a quick update.
Spoken to Mrs Rustic this evening, they are now grandparents again. Their granddaughter was born last Saturday.
Congratulations to the Rustic family.
I hope this post doesn’t sound inappropriate.
Thomas61
08-03-2018, 07:26
Not inappropriate mate, nice to hear they are grandparents again.
Just a quick update.
Spoken to Mrs Rustic this evening, they are now grandparents again. Their granddaughter was born last Saturday.
Congratulations to the Rustic family.
I hope this post doesn’t sound inappropriate.
Nah, that's not inappropriate! It's some great news for them, and a nice little boost! :D
lovely news for them indeed
don simon
08-03-2018, 11:03
Congratulations to all. :thumb2
johnb5177
08-03-2018, 13:02
Great news, just the tonic they need.....:thumb2
Blocky10
08-03-2018, 22:11
Yes great news indeed. Congratulations:thumbs
jims-terrano
05-04-2018, 18:08
Hi all just letting you know that Rustics wife has been in touch with me today and unfortunately Rustic has passed away. I’m sorry guys but I can’t think of the right words. I’ll miss him greatly as a active member of our forum and as a great friend. I know the Rustic Road Trip meant a great deal to Rustic and his family and it gave him so much pleasure meeting so many of his friends, the scotch was nice too.
So I’m going to give it a few days and then contact Roz and explain that I would like to start a collection in Rustics memory for a charity of his family’s choice. I’ll start a separate thread for this later.
For the moment post your memories of such a wonderful man.
Rustic gave me lots of advice but one thing I keep referring to is for the stubborn bolts, slacken and tighten and take your time.
johnb5177
05-04-2018, 18:25
Very sad news indeed, a great friend and 'uncle' to us all, we will miss him but also celebrate a great man......:bow
Thomas61
05-04-2018, 18:33
Such a loss.
Take care Rustic, rest well.
Thank you Jim for the updates they mean alot.
don simon
05-04-2018, 18:49
Aaaw crap! I was thinking about them lastnight.
No more pain Uncle Rustic.
RIP.
Did we ever find out how old his truck was?
Thank you for letting us know Jim.
Sad news indeed.... RIP Rustic.
Blocky10
05-04-2018, 19:22
Sad news indeed.
It was a privilege to meet Uncle Rustic, to put a face to a name and he will be greatly missed.
RIP Uncle Rustic.
Condolences to Roz and family.
terranosaurusdoug
05-04-2018, 20:19
Very sad news, he will be missed :(
solarman216
05-04-2018, 20:50
RIP uncle, the pain is over now, you will never be forgotten, and thank you for all your advice over the years, Rick
Barrbeast
05-04-2018, 22:46
Really sad news RIP Rustic
makeitfit
05-04-2018, 23:07
Bugger :o
So glad just to have spoken online with him. All things boats was a fav and ofcourse he did mention now and again his car was getting on a bit :lol
His openness to Prostate cancer will go on amongst us I hope :lol, I know it encouraged me to go and get fingered :eek:
I'll continue my Movember fund raising as long as I can, I know it helped him a lot at the end.
RIP Uncle Rustic
Lazy-Ferret
06-04-2018, 01:53
This is one of those times when you know you have to write something, but I really do not have any words that seem to be able to be a suitable response.
Sweet Dreams Rustic, http://www.fluffyferretforum.co.uk/forum/Themes/Fluffy%20Core/images/post/sad.gif
I never met you in person, but I feel from all the conversations, and your ever present "sensible" but never condescending advice, that you were a great man, and I would loved to have got a chance to meet you one day. :rose
http://www.fluffyferretforum.co.uk/forum/Smileys/Ferret%20Smileys/lh_angel.gif
Very sad news.
R.I.P uncle rustic.
RJL Services
06-04-2018, 13:48
RIP Uncle Rustic
enjoyed his posts and will be sadly missed :bow
Davey Boy
06-04-2018, 17:58
Thanks Uncle Rustic.
RIP
macabethiel
08-04-2018, 12:22
Only just picked this up so sad he did not have a longer retirement with Roz. He was a great guy who I exchanged a few PM with over the years. His advice and experience will be missed.
RIP Richard.
jims-terrano
14-04-2018, 16:54
A quick update for you all.
I’ve spoken to Roz who seemed quite well under the circumstances. She would like to see people’s comments in memory of Richard so unless anyone has objections I’ve offered to copy and paste everyone’s posts after Rustic passed away and indeed any you wish to post after this.
Roz has given her permission for us to have a collection in memory of Rustic and has suggested the hospice that looked after him over the last few months. So I have emailed them for advice and will either post on this thread or start a new thread. So keep your eyes open.
we have lost one of our family , sometimes words cannot convey our sorrow , sincere condolences to roz , and I'm sure that as a family we will support her anyway we can ,rest in peace my friend :rose
Blocky10
14-04-2018, 19:25
I have no issue letting Roz see these comments.
I was searching for handbrake info and found a thread from 2011ish where Rustic had posted which made me laugh. His pearls of wisdom will keep cropping up for years to come hopefully.
I'm glad he managed to drag himself to meet us at the Rustic Road trip. He had a rough time of it, but still had a smile.
To be honest, if they hadn't arrived in their Mav, I wouldn't have known it was him.
Who's going to be our Health and Safety officer now:lol
RIP Uncle Rustic. :(
Unfortunately I never got to meet him, but his memory will live on strong within our Forum Family! :thumbs
I can be sure that we will raise a glass to him any time we all meet up. :beerchug:
My sincere condolences to Roz and the rest of Uncle's family! :rose
All The Best.
Jay
jims-terrano
08-05-2018, 17:27
Hi All, well I’ve just got home from Rustics funeral. The club was mentioned in his eulogy as we all played a big part in his life. The vicar spoke about the good that Richard has left behind, he raised awareness so members of the club got themselves checked out, how Richards story has saved a members life, also how Richard supported a member whilst they were at a low point. Also that we called him Uncle Rustic. Even his Maverick got a mention, the week after he passed away Roz started it up and took it for MOT which it promptly passed with no advisories. Roz said that he would’ve been so pleased looking down on it all. His Maverick hadn’t moved or been started Since the road trip. Though I suspect he started it on the quiet. I spoke to his two carers and apparently one of them helped him into the garage on one of his good days and before she could stop him he had the bonnet open checking the oil.
Uncles family have all asked me to pass on their sincere thanks for the support the club gave to Richard throughout his illness. The Rustic Road Trip meant a great deal to Richard and his family. We really made that man some good memories that day and the support we gave his family will never forget.
I emailed St Giles hospice a few weeks ago asking for advice about have a collection for them in Rustics name. I’ve not heard anything back from them so I’ll phone them one morning this week as my shift pattern will allow. Will let you know more when I hear from them.
don simon
08-05-2018, 17:37
Hi All, well I’ve just got home from Rustics funeral. The club was mentioned in his eulogy as we all played a big part in his life. The vicar spoke about the good that Richard has left behind, he raised awareness so members of the club got themselves checked out, how Richards story has saved a members life, also how Richard supported a member whilst they were at a low point. Also that we called him Uncle Rustic. Even his Maverick got a mention, the week after he passed away Roz started it up and took it for MOT which it promptly passed with no advisories. Roz said that he would’ve been so pleased looking down on it all. His Maverick hadn’t moved or been started Since the road trip. Though I suspect he started it on the quiet. I spoke to his two carers and apparently one of them helped him into the garage on one of his good days and before she could stop him he had the bonnet open checking the oil.
Uncles family have all asked me to pass on their sincere thanks for the support the club gave to Richard throughout his illness. The Rustic Road Trip meant a great deal to Richard and his family. We really made that man some good memories that day and the support we gave his family will never forget.
I emailed St Giles hospice a few weeks ago asking for advice about have a collection for them in Rustics name. I’ve not heard anything back from them so I’ll phone them one morning this week as my shift pattern will allow. Will let you know more when I hear from them.
A real pleasure to have met and known him. A gent. And he will never be forgotten here. :( and :)
Thanks for posting this up Jim..... I will raise a glass to Uncle Rustic this evening.
johnb5177
08-05-2018, 19:48
Thank you Jim....:bow
Thanks for posting this up Jim..... I will raise a glass to Uncle Rustic this evening.
Doing the same!:beer:
My God I've only just seen this news now.
My thoughts are with all the family.
His memory will live on in them and of course this forum where many were his friend. RIP
Davey Boy
09-05-2018, 13:14
Thanks for your efforts Jim...
I'm raising a glass of the Old Speckled right now.
Thanks Uncle:)
Blocky10
09-05-2018, 21:35
Thanks again for the update on Uncles funeral Jim. I too will raise a glass to him and his family tonight.
R.I.P Uncle Rustic.
Thomas-the-Terrano2
09-05-2018, 23:34
Thoughts with family and friends.
solarman216
09-05-2018, 23:54
I have been drinking a glass to my dear "Uncle Rustic" since the day of his passing and will continue to do so with fond memories, much regretted we did not meet sooner, Rick
I've lost my words - last time I was late to post my message, then now I was too late to say anything. But my heart goes to his family and also hope he's having a peaceful time after all battles he has gone through. I haven't met him nor even had a personal chat with him, but I see the strong bond to everyone here in this forum which is making my eyes with tears.... :bow R.I.P.
Thank you Jim for all your updates. Great to know what is going on.
johnb5177
14-05-2018, 17:28
Hey Zephyr, family here mate......:grouphug
Hey Zephyr, family here mate......:grouphug
Thank you, John :)
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