Advanced prostat cancer part 2

Sending you all hugs and hope that things get better again soon.

Steve xxx

Fantastic words
Keep fighting that's all any of us can do
Best wishes
Debby

Oh Julie
Your post made me so sad as did your poem beautiful words. You have been such an inspiration to us all and made me smile so often when Mike was going through his journey and believe me at times it was very hard to smile. We are all thinking of you both and of course your boys. Stay strong and just be you.

Big hugs

Molly xxx

Powerful words Julie and I can well imagine the anxiety (and exhaustion) that lies behind them. I know that you had problems finding palliative care help in the past but, given that the pain is increasing, and that they are the pain experts, I wonder if it might be worth giving it another try? They made such a difference to us and were a lifeline when things got really tough. Do hope that you and Trevor get the support you need right now. Sending you tons of love and hope and hugs.

Ruth xxx

MRI and CT scans were completed two weeks ago and ONC visit Today It’s was with our lovely Oncology Nurse Claire who is an absolute star and without her diagnosis of the Sepsis I have no doubt that I would not be writing this update today because quite simply Trevor would not be here !

I just need to back track to Sat before i do the scores on the door.

We received a letter out of the blue for Trevor to have an ultrasound on his kidneys this Fri this of course sent him and myself into a really spectacular nose dive , this is where I come into my own and like the duck in the water scenario my face and demeanour showed absolute calm when I said they are probably just checking everything from the sepsis.

Even though he knew and I knew that was probably not the case as often happens with couples that have been together for years there is an unwritten rule that when this game starts both parties have to continue the pretence . So even though he knew and I knew neither of us was going to admit it. Funny old game ! It’s a bit like PCA chess.😉

So here we go scores on the doors

Yes you guessed there is good news and bad news

Good news first

ALP Down from 238 in September to 183 so bone markers good

MRI and CT support this no decrease in mets but no increase either, so mets stable and it looks like the Raduim 223 has held things back ( A Yey moment)

That’s kinda it for the good news

PSA up from 3691 to 6265 ouch but hey still half of our starting point

HB is down to 9.5 and we had a bit of a Hoo Haa before they would issue his Abbi they wanted to redo bloods , trust me he wasn’t going to allow it withought a fight he hates doing bloods . It took me twenty mins to persuade him and then they couldn’t get any blood after trying from both arms . Eventually they got enough to test and all ok to prescribe his Abbi

Back to the kidneys and there are two suspected areas hence the ultrasound scans on Fri

Outcomes could be

Benign growth

Pca spread

Cancer of the kidney not connected with pca

There is also an increase in size on 2 lymph glands

What can I say we have faced the Dragon many times and we have continued, so come on Dragon bring it on ! You don’t know who you are messing with !

BFN

Julie X

The dragon has met his fire eating match!! You go girl!!

The scan on the kidney has revealed option A It’s a benign cyst.....PHEW

Bad news Trevor has had a huge spike in pain over the weekend and everything we tried had little to no effect so he was admitted to hospital this morning hopefully to get the pain back under control.

I must admit I am a bit confused as the worst of the pain sites are where the worst mets are , shoulder, spine and pelvis and yet the recent scans showed no increase in size in these areas.

I suppose with the spike in PSA up to 6265 the cancer must be roaring away somewhere even if it’s not showing on the scan.

BFN

Julie X

Update is Trevor is still in Peterborough hospital and to be honest there isn’t much improvement his pain level has gone from a level 12 to around 8 , he is very sleepy and zonked out , he isn’t eating or drinking so they have started IV fluids today .

He is unable to move even to shift position in bed.

So we are pretty much back to where he was a few months ago.

He is back on the general ward where he was so badly treated in the summer, I have raised the roof today and said I want him moved ASAP onto an Oncology but beds are limited.

If anyone has got help or advice on how to get him moved to hospice care for pain management I would be really grateful .

Watching him struggle again is horrendous.

BFN

Julie X

Hi Julie

So so sorry to hear the news Julie - must be hell for you to see Trevor in pain and back in a ward that you have no faith in.

No idea if this is of any help since I expect procedures and bureaucracy vary a lot depending on where you live but I ended up phoning our local hospice at 8.00am on Saturday a week before Tony died to ask/beg for a bed for him. My hope was that they could rebalance his meds and strengthen him enough to get him home again. They said they had one bed available and that I should call the out-of-hours GP to come and complete an admissions form. He came immediately and did so. We were getting packed when sadly they phoned to say that an emergency admission was on his way and that he would have priority, but in principle it was all very easy. If it hadn't been a weekend the palliative care consultant would have organised it for me but I was surprised at how straightforward it was to go direct.

Is there a local hospice you could phone to see what's possible? Apologies if you have already tried that route.

Will be thinking of you and sending love and hugs. I do feel for you lovely lady.

Ruth xxx