Making the most of it

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.