Hello

Hi Steve

So sorry to hear of your debilitating condition and how limiting it is for you as a previously fit, active person.  My husband really misses his long walks and bike rides, but just hasn't the energy nor stamina for either at present.  You sound really positive which is 'half the battle'.  Living alone we hope you are getting all the help and support you need.   

Best wishes to you. 

Hello Steve, it sounds as if you have been going through a very difficult time. The diagnosis , surgery and altered mobility must all have come as a big shock and that would have been hard to take on board without a partner to support you. I do hope you have a good network of friends and family? Getting an exercise bike sounds like a very positive move and far safer than wobbling along on two wheels on the roads and risking an accident! I hope it helps you regain some physical strength. I wish you all the very best on this prostate cancer journey and hope that the armoury of treatment options that the medics now have will help you big time.

Hi Steve

I did read your post elsewhere regarding your cats and was going to respond to that post only I was busy with work yesterday and never got round to it - I hope you found a solution to that issue.

I was also going to say there is a very welcoming community on the Prostate Cancer forum - why not come and join us - and here you are - you are very welcome.

Going forward I note you have a Stage 4 diagnosis - how is the treatment plan going and - have you started any yet. Your diagnosis is only recent.

I too am from the north of England and try to get as much exercise as I can - the issue I have found with Prostate Cancer is that the Pennine Hills have become much steeper since my diagnosis!!

Keep us in the loop and we look forward to hearing from you.

Kind Regards

Brian.

Hi

If they don’t know about the cancer, unless you told them, they treat it as a normal out patient plus unfortunately five weeks to early. Been to A and E a few times they never look for cancer only your problem, don’t know why they didn’t at least give you an X-ray.

I have two crushed or squashed vertebrae plus cancer in my pelvis, so I know about movement, my wife bought me a a back brace this helps no end, I also have two knee braces all elastic Lycra again very good, I have two excersize bikes, the large main one, and a small one, place on the floor sit on your couch and peddle away. Go that bit further and get some small hand weights also good.

Stay safe

Joe

Hi Sned,

Thank you for your reply. It has been a huge change, and it all happened so fast, as if I'd been involved in an RTA, sent off for emergency spinal surgery, and then when they operated they discovered I had metastatic cancer. The treatment leaves me exhausted but there are periods of energy each day and I make the most of those windows of opportunity. I'm an independent type so am coping so far, and have the phone numbers to ring if I needed help, urology nurse, prostate cancer nurse, district nurses etc, and of course one day a care package will be needed.

Steve

Hi Millibob,

Thank you for your reply.  I was DRE'd, catheterised and injected with 2 loads of Degarelix in A&E by urologists that first night, as soon as the MRI scan result came through and before biopsies were taken from bone during surgery 4 days later.

Word came through from neurosurgery that I had to lie flat due to the risk of nerve damage, so I had to be put on scanner benches and into bed and transferred to a spinal unit using bed sliders. This lasted for 3 days until I could mobilise again, and that was how I got my diagnosis, staring at ceilings while laid on a trolley in an A&E corridor, along with 54 others waiting for pole position for a bed.

A month later I started Apalutamide. The HT brought testosterone down by 99.5% but the PSA is taking its time to come down, last test was 17 (from 65, then 49). Next test is on the 11th.

The nearest bus stop is a 1/3rd of a mile away, and involves a hilly part, but I was determined I'd build up to walking that far and not become a complete prisoner. So long as there's a seat at the end of a walk I'm okay. It felt humiliating at first to walk through the neighbourhood I've lived most of my life like I did, as slow as a tortoise, with the stick, when previously I'd either 'strode or rode', and wearing joggers/trackies (to hide the catheter), something I don't normally wear.

I have main shopping delivered but still go into town by bus, but can only manage a single destination, and then catch a taxi home, and as soon as the driver sees me with a stick they leap into action with the bags, and the same when home.

And if the taxi driver is over 50, and they are chatty enough and start talking about their own backs, as many seem to, I mention what I've been through, how it arrived without the usual symptoms and recommend they get tested, explaining there's no national screening for this like there is bowels from 55. If I can nag 100 men and save just 1 it will be worth it.

Steve

Hi Joe,

Thank you for your reply. Yes, they didn't seem to consider cancer when I went to A&E, this after I rang 111 following a painful night trapped on the staircase for 40 minutes of agony and their advice was to go to hospital as it could be cauda equina syndrome, not cancer, as I'd only been able to pee for a few seconds each time I tried.

They ran blood and urine tests for infection, did a bladder scan, reflex tests, but only at my request did an x-ray of the hip (I never really had any back pain, despite the fracture) and that was clear.

When it came to A&E considering other possibilities they mentioned rheumatoid arthritis which I knew couldn't suddenly be the case, and they briefly mentioned getting the prostate checked but said they didn't have access to that, but they should have sent me for a scan. They also intimated that I should have gone to my GP first, not them.

Later saw the GP, who fortunately saw my phone call flagged up by a receptionist who wasn't taking it seriously enough and trying to book an appointment weeks ahead and he put it on emergency triage, but then comes the wait for an available blood test with a nurse at one of 4 practices, and then a 5-day wait for the result.

All hell then broke loose, first the GP rang and then a urology nurse, who said she'd ordered me a '4-hour ambulance', which turned up in 50 minutes. Never been an inpatient before, never had surgery, so I was the least prepared patient, my legs only allowing me to get together some toiletries in the time allowed. It felt like I was kidnapped, but for my own good.

But a very kind Scottish man, who'd had throat cancer and was being discharged from the ward came over to talk to me, as I was laid flat, and gave me a lot of his tuc and other stuff.

I'll get something for upper body exercise as I'm no longer carrying a hundredweight of shopping home from a bus stop 1/3rd mile away, or a pair of 2 gallon watering cans down the garden!

Steve

Hi Steve

Flippin heck - you have been in the wars - and I thought I had had a bad time. It most be hard for you as you say living on your own. We as a community are always about and when you post something it's very unusual if you don't get a speedy reply.

Like you one of the main issues I have had on my cancer journey has been fatigue / fitness. I have never been a gym bunny but do try and walk 10K steps each day. I don't always manage it but a rescue border collie and rescue greyhound help!!

I also agree with you about national screening - it's needed badly. In the 19 months of my journey I bang on to everyone I come across to be checked out. So far out of 6 friends who have had PSA tests 2 have started on their PC journey!!.

You look after number 1 and keep in touch.

Kind Regards

Brian.

Hi Worriedwife,

Thank you for your reply, I responded yesterday but it didn't display. I don't really have that network of people to support me, but have the phone contacts for nursing staff should I need them, and at some stage in the future a care package will be arranged, but for now I'm okay.

My leg muscles withered away during 7 weeks of 'sciatica', and I'd lost 2.5 stone from mid January, but have managed to put on a stone since treatment began and have filled out my legs and can now flex some calf muscles again.

The roads where I live are busy, and I'm Class of '72 Cycling Proficiency Certificate so never cycle on the pavements, but there is a quiet road to a caravan site I might try one day, but for now I cycle 'down the garden' with the exercise bike facing that way at the living room window, then I have a view, with the window open a rush of moving air for special effect.

Steve

Hi Millibob,

Thank you for your follow-up reply. I have two rescue cats, they don't demand walks like dogs do but can be demanding in other ways. Following my operation bending down to feed them and pick up their used dishes was difficult but I solved that with a litter picker stick and disposable paper picnic bowls which also saves on the washing-up.

Men seem to fear the DRE so don't go to the doctor, but far greater awareness and buying PSA testing kits online would save more lives. I am frustrated that when I had a bowel scope done at 55 (now 60) they didn't check the prostate then, or have an ultrasound device or attachment to do the job while boasting the probe cost £50k. Maybe I didn't have an enlarged or hardened prostate back then, but had any irregularity been found 5 years ago it might have prevented me suddenly being told I was Stage 4, because until the sciatica I was symptomless.

Steve