Making the most of it

K

As already said look after yourself.Hope the treatment does what it should do.

Thanks Chris

What can I say, Kentish?  I understand a little of what you are going through, but only a little.  And even with that little, I so feel for you.  Anything that makes the day not run as smoothly as it can for either of you just tips you over the edge into tears, doesn't it?  You must be feeling on edge all the time, and continually horizon scanning for the next thing which can go wrong.  And trying to keep the wheels spinning for the teenagers must be so hard.

Glad at least that radiotherapy is done, and hopefully by now the stent placements are done and successful. Am pleased to hear that there is a plan for some time back in the hospice, which as you say will hopefully give you both time to regroup.  But even then it is so hard to even breathe, isn't it?

Sending love, wish there was anything more useful I could send :)

Daughters school "aim" to have that in place, as with anything that requires communicating with several people, there is room for failure. All in all they seem to be handling it well most of the time.

Son was offered a place at the interview, whoop whoop. He's probably going to defer as he doesn't really have a "passion" for studying at the moment😂. He has a brilliant job to go into full time that he loves and they have offered him an apprenticeship if he wants it.

The kids seem to be okay ish.

The stents story:

Booked for 1pm, actually done at 3.30pm, nil by mouth from 7 am, just sips of water....urine output dropped dramatically to almost nothing!

Radiographer said they may have trouble given the cancer visible in the bladder. Bit of a shock to be told that as noone has discussed this with us since the turp back in November when the surgeon said he had removed prostate tissue from the bladder. I had kind of assumed that this was likely but I don't think N had given it any thought. It was a very unpleasant moment.

The stents were hard to place and the liklihood of problems is high. So far today nothing has come out of his urinary catheter, the kidneys are still putting out of the nephrostomies though. The consultant said they wouldn't clip the nephrostomies today to ensure the kidneys are still functioning.

Disappointed.

After the radiographer comment I spoke to the ward nurse about whether it has been discussed in the team meeting that there is soft tissue invasion/spread etc. She said no and they weren't aware of its presence in the bladder. The nurse spoke to the consultant last night and asked him to have a more comprehensive conversation with the both of us this morning.

He said that as far as he was concerned the prostate cancer is what's known as locally advanced. I have read lots of other's diagnosis terms and N was never given the T/m etc stuff. I explained this to consultant, who seemed surprised at what appears to be our ignorance.....

N has got a very leaky bowel now and I tried to get across that N needs a more comprehensive diagnosis and staging/investigation , not for any change in "active treatment" but to enable us to discuss the possible outcomes e.g nephrostomies, spc, what would we do about spinal cord compression. What palliative care plan is next, what do I choose when Nigel is unable to choose for himself!

The palliative care nurse understood me perfectly but consultant found it quite difficult to see why we would want know more s**t news.

Stool sample has been taken to rule out infection/poor gut bacteria and they are going to do a dre to see if his anus has any tone or if the nerves are affected. Also some other neuro checks to look for spinal cord compression.

Hoping tomorrow is a better day for N.xx

Congratulations to your son for being offered the Uni place, and for also having the full time job/potential apprenticeship as an option (which if he loves it may be a better choice).  So good to have choice as to what to do, and to at least feel that something is settled there.  And must be good for him to be able to tell N this too. 

I hope the stents do work for N.  And also that you can work out what is happening with the bowel incontinence.  Sadly we have lived with that for a year or so now - causes, who knows, but possibly the nerve stuff, and maybe the radiotherapy. 

We also never had precise staging information.  In the early days I wasn't as aware of the questions we should be asking, and very often we differ in our approach to how many questions need to be asked.  But I think I am like you and prefer information to work with and plan around.

Hope today is a better day.  And as Chris says I too am thinking of you every day.  (And PS Chris if you are reading this I think you are amazingly strong too, and I would echo Kentishs comments about the HT effects.  I'd actually trade almost anything if it meant less pain and more mobility for H).

The kids brought in KFC for dinner and N munched his way through 3 pieces! He is on a ward of 4 but there was a little period last night where there was only him and one other left on the ward, it gave us and the kids room to spread and we had a good giggle. A lovely couple of hours.

Yesterday's gloomy moment was when the consultant came on the rounds, he is the chap who N was under originally. He talked about the possibility of the nephrostomies staying or perhaps going to the hospice for a couple of weeks and then seeing if they could try again with clamping them off. Nothing new there. But his response to the oncologist having booked a bone scan and arranged the radiotherapy and offered enzalutimide was "well that's very optimistic of him, I don't think you should have any more treatment, you are very poorly and perhaps should be just getting ready to go back to the hospice." OMFG, the man has absolutely no bedside manner at all. N is aware that he may not be well enough to start Enzo, he knows he may not manage without the nephrostomies, however, having a glimmer of hope, no matter how small, is what encourages him to try. Why would you take that away?!! Consultant seemed to be oblivious to how he was making N feel, he also said "oncologists like to order these scans every 3 months and they often treat beyond when is realistic" how unprofessional. I pointed out N has not had a comprehensive staging/spread review since summer last year but he said he didn't think it was necessary as it won't change treatment. Aaaarrrrrrgggghhhh, I want to get off the merry-go-round.

It took me all morning to soothe N back into a more positive state of mind, he was ready to cancel today's bone scan and just leave the nephrostomies and go back to the hospice and call it a day. It was awful.

Please excuse the moan, I just needed to vent.

This morning they are going to try clamping the tubes and he is going for a scan. And we will see what happens next.xx

After all the lovely normal things you did as a family and no medical interventions how disappointing to get a doctor with such a poor bedside manner and no emotional intelligence.

You are so right that everyone needs a glimmer of hope amongst the crap.

Had he even considered that the radiotherapy and enzo might make N a bit more comfortable at the very least?

Ian

It was back to nice consultant this morning, the one who isn't entirely human but tries to be😄

Today's f**k up:

Despite me going on and on and on about the scan, noone had booked a porter to take N on his bed for the injection, not even handed over to today's nurse even though N mentioned it during rounds this morning. I was asked to take him on a chair, poor N, I think the fear of being off the ward, out of the bed and having to go to a different floor was all too much. He tried, we got to the reception of nunclear medicine where he promptly said I can't do this I'm in too much pain and I'm going to faint.

The lovely scanning lady helped me wheel him back to the ward and get back in bed. Ffs, one floor of the hospital away, truly p****d off.

The lovely lady went away and rescheduled for tomorrow on the bed, booked porters and came and soothed N's frazzled nerves.

N is now in a oxycodone induced stupor and they still haven't clamped the nephrostomies.

Palliative nurse has just been round to ask if we were aware that N had a scan in December and had anyone talked us through the results!!!!

No...I have no recollection of that happening during the week he was being prepared for the hospice. Nurse felt that perhaps that would give us a better picture of the cancer but could not go into detail because she is not a doctor. Hospice doctor who works in the hospital will come tomorrow to go through this with us. I hate waiting, clearly it's just a bit more s**t than we thought and maybe it's too s**t to carry on with trying the Enzo etc. No wonder consultants struggle to understand where we are coming from if they think we know about this scan!!!

N's hb is back below 80 this afternoon so probably having another transfusion. However, gfr is over 90. Got to find something to be pleased about.😭

What's a yam yam?!!

My son is doing an "ology", his opinion of my rant about inhuman consultant was "that's what's called displaced anger mum" he's probably not wrong.

I can't be angry with N, he didn't do anything to cause his cancer and he's done his absolute best to survive it this long, so this leaves me with being angry because it's not b****y fair but with nothing to aim it at. So I go for the easiest target.

So we have met most of the urology consultants now and are fairly familiar with how each one interacts with us. This morning's was the consultant who talked me through making the choice to go to the hospice at new year. We discussed our ignorance at the disease progression and that actually it has been known by urology/oncology for some time that the disease is pressing on the bowel and is in the lymph glands, I told him how I felt everyone thinks we know this and perhaps that's why I feel that my questions are met with resistance or confusion.

I confess it was not pretty as I sobbed my way through this and the gaggle of staff watching looked horrified. Not sure if it was because of our lack of information or my emotional breakdown!

The consultant reassured me that regardless of what is shown on the scans, the decisions we have made so far were unlikely to have been any different.

The Palliative care nurse and doctor will be coming later anyway to discuss it in more detail and give us a clearer picture of why N's symptoms are what they are.

I hope that what was taken away was to never assume that the patient or their partner are totally informed and to recognize when they are asking questions that perhaps they need a more comprehensive conversation to check everyone's on the same page.

Perhaps with some editing of personal information, our story should be sent as an open letter to the urology /oncology /gp to look at how we all communicate with one another.

Like many situations, it's easier to find the negatives. N's medical care from the nurses/csw's /auxiliaries has been fabulous. They look after him with so much kindness and dignity. I wouldn't be able to go home at night if they didn't.

Feels like a long day already....

You would think this would be a basic humanity, wouldn't you. 

So angry and frustrated for you 🤬

My cousin's husband died last year at the age of 52. He had had surgery some years before and the urologist told him that he did not need to be monitored for the future because he was now cured. Even when he showed signs of recurrence, the surgeon refused to see him, at one point writing a stinking letter to the GP about the GP daring to question his superiority and expertise by suggesting that the blood test results were a concern. Sadly by the time a second opinion was sought, Dave was terminally ill and he died soon after. His wife was not stupid - in fact she is an experienced district nurse - but both she and the GP were outfaced by a big ego and a flexing of status. It is now the subject of an investigation but that does not bring a lovely man back or provide any comfort for my too-young-to-be-a-widow cousin.

I have been reading your story from afar, every post, every day. My heart truly goes out to you for the sometimes appalling manner in which you have both been treated and breaks with each new symptom, treatment or pain.

Please know that there is an army of silent sympathisers out there wishing you well, sending you strength and offering love for a fellow brother and his loved ones.

Bazza xxxx

Thanks Gilly,

Isn't it horrible when stuff starts to change? As you've probably noticed, I cope best when I can understand why something has changed. It doesn't alter the thing but makes it less frightening to me. N relies on me to find out the why's and relay it back to him when it's necessary. He's been very much an ostrich on occasion! This is not always a very helpful approach.

N generally has a reasonably optimistic view and we both felt secure with the onco. But nagging doubt as to whether the choices are the right ones go hand in hand with this disease. Feeling like I do now, I wish I had asked more questions and not been so afraid of making me and N upset at the meetings. We're upset anyway. 

I hope things go as planned for you, at this time when things get difficult I think a good hospice/palliative support team makes a huge difference. They get that N being comfortable is the top priority and that sometimes this means no treatment but other times intervention is needed. 

Teacups,

Thanks, and I'm sorry to hear the pain is bad. N was going to have his Fentanyl patch doubled from the 12mcg to the 25mcg yesterday as he is taking the oxycodone every 6 hours. His pain is not under control and that in itself is exhausting. N's pain continues to primarily come from the catheter area, often in waves but he's a bit "I'll  save the instillagel until later" when he could actually just have it all the time!

It's so hard to get the level right, if he's pain free he's often asleep or spaced out. Hopefully the increased patch may improve this.

Daughter and I managed to get up at 5am to send her off skiing, I now don't know what to do with myself, it's too late to go back to bed but I'm too tired to make use of the hour before I go up to the hospital....

I am now wine, chocolate, junk food free, it's just lost its appeal. I'm left with coffee...Lots of lovely  coffee but not after 2pm as I can't get to sleep😄

Kentish

I can't really offer you any practical advice but my thoughts are with you both. Try to get some me time. I looked at your profile today, I didn't realize how young you both are.

Thanks Chris

Blocked within 20 mins and unable to be flushed.

Poor N, ward nurse took it out and tried to replace with a 16 but couldn't get it past his prostate so ended up getting a 20 in. Unbelievable, it took the best part of 2 hours to sort this out, N in retention and pain, awful time trying to get the catheter in. I am so angry at the registrar, how could he think this was in N's best interest?

Consequence is N having oxycodone every 2 hours to keep on top of the pain since.

N unsure about leaving tomorrow as he's frightened it will block again and they can't use the large saline syringe flush at the hospice. Ffs, one step forward eh?

Had to get in the wheelchair even though he didn't want to after all the trauma, his air mattress needed replacing and there wasn't room on the ward to pat slide him, he managed the few minutes it took for them to change the beds over and has slept on and off since. Eyes rolling with the oxycodone.

Not the trouble free day we wanted but on the other hand, if we hadn't been here for the catheter change and they couldn't get it in at home or the hospice it could have been much worse. Got to look for a plus side otherwise I'm never going to get over not insisting the registrar put a 16 back in. Kicking myself.

Thinking of you Kentish and sending you lots of love. x