Making the most of it

I'm sorry to hear about your own family, it is a small thing to be grateful for that I don't feel that N was treated poorly at the diagnosis stage and that we actually had a very efficient experience of the initial stages. It must be awful to have to fight for a diagnosis, Mr's and Dr's can be very intimidating. I hate that I feel like this but I don't seem to be able to "man up".

I think the failure in communication started when we didn't have a Cancer nurse Specialist at the diagnosis appointment. An assumption has been made since then that we have been presented with all the information from scans and tests for the last 2 years and actually I think we have had very little info at each appointment, probably because I wasn't asking questions that would be relevant.

I do feel like some egos are bigger than others and that we have come up against them regarding N's palliative treatment and what their definition of palliative is.

What I would hate the most is feeling like I didn't do enough when N couldn't ask for himself. Ever present in my mind is his DNR and if I'll have to act on it at home or elsewhere, I don't think the bods in charge appreciate the overwhelming stress the situation can bring, unless perhaps they have been there themselves.

Nephrostomies to stay in for a couple of weeks so N can go to the hospice for a rest. They are still clamped and the stents are functioning. Today's and tomorrow's blood tests will show any reduced kidney function.

N is tired, really tired and looking pretty awful again. I don't know whether this is the disease or the environment or a bit of both. His Enzo clinic is Monday so N is hoping the hospice don't have a bed until Tuesday so he can at least try to get to the clinic once to see if he is fit enough for it. One can hope.

Lots of questions for the consultant in the morning. We met the last of the 5 strong team today, he was pleasant enough and he is back again in the morning.

N now unable to empty his bowels, had a phosphate enema, I expected there to be more than there was. So he has gone from uncontrollable emptying to constipation, he's not happy. Possibly side effects from the radiotherapy? Lots of mucus been produced since last weeks zap. I'm hoping the palliative team will help with this as it makes N so uncomfortable in his nether regions.

Oh dear teacups, that's not good. I hope they have been able to get on top of the uti and the pain from the fractures. It's so hard to watch N in pain and not be able to help.

As usual, nothing has gone to plan....to much blood in catheter to be discharged and now the sodium loss has reared it's ugly head again. Just over the weekend it has dropped from within normal range to 114. On a sodium drip and blood tests been done to check the reason for loss.

Loads of clots in the catheter and bypassing galore....consultant this morning discussed doing the change to go home/hospice under local anaesthetic and sedation.

Didn't make it to oncology clinic, rescheduled for next week...N in too much groin pain to get out of bed.

Looking for positives: if catheter had gone well then bloods would not have been done this morning and sodium loss would have brought us back to a&e.  Gotta look for the upside😩

Hi Kentish

I'm playing catch up as i have been busy with the new baby and general work etc. What an awful catalogue to read, my thoughts are that medics should read this horror story to get the picture of how lack of communication can affect families so badly. I'm afraid I have always been the mouthpiece and almost never let them get away without telling us the full story and seeing the pictures. John would never ask, I do. We have generally been lucky with our consultant and registrars though as they have been keen to respond to us. I think they tend not to offer too much, and only tell us if we ask. We didn't know that John had spread to his neck until our consultant mentioned it in passing, I didn't think to ask as I had no reason at the time. It was a shock.

Poor N is having the most awful time, everything is linked so it's no wonder that one treatment affects something else every time. John has suffered from terrible constipation/runs since they radiated his prostate when he was in retention, had a supra pubic catheter (he still has it) as his tumour was so large it was blocking the ureters as well as the urethra. That has led to ongoing and very painful bladder spasms. But at least he isn't in kidney failure anymore.

I have enormous respect for you and the children and hw you are all handling this awful situation. To say it's not easy is to minimise it to the nth degree. I'm glad they have been able to go skiing, they need a break and some normality in their young lives. 

As for the consultant who said such awful things to you both, there are no words for people like that. I applaud honesty but to take away hope is appalling. Shame on him. The suffering your family is undergoing is so terrible I wish we could help, I really do.

I can only send my heartfelt love to you all 

Love Devonmaid xxxx

Edited by moderator 20 Feb 2019 at 18:40  | Reason: To correct spacing issues

Lynn, you're so funny, and down to earth...my neighbours have a little one, 4 months old, there's nothing like a smile and coo from him to brighten up the day.

Thanks Devonmaid,  

I was beginning to think they might go with the spc , but this morning consultant said they would probably do a cystoscopy to guide a wire in and then put the catheter in over that, to cause the least amount of trauma possible. I like that plan and so does N.

Endocrine team have said to restart the demeclocycline,  so that should improve his sodium quickly but will be monitored while he is an inpatient. We like that plan but are understandably nervous about the side effects. Hopefully his kidneys will copemail now he has the stents.

Nephrostomies are booked to be removed on Monday as an inpatient by Interventional Radiography so they can be sure they don't dislodge the stents. Also a good plan.

N is fed up with the new issues but resigned to staying in. 

I have to say I'm feeing a bit miserable,  it's a relief to come home to an empty house to have a good cry, not having to put a brave face on for the kids. It was my birthday on Monday and N was pretty poorly from the catheter trauma, he wished me happy birthday and the rest of the day was spent trying to get his pain under better control. It's not that we really "do" birthdays, it was just such a sad day. Every day feels really sad at the moment, there are very few "up" moments for N and it's awful and painful to watch. I'm very sad.

My heart breaks for you, I have followed your story with great sadness, and a desperate dread that I don't find myself in your situation, I would not be able to cope as you do, and I admire you so much.

Please know that so many on this site hold you and your family in our thoughts and prayers. I don't know what else to say.