Making the most of it

User

Posted 05 Feb 2019 at 20:00

Kentish

Ill send you a private message with our urology consultants details. I am not allowed to name names here.

lots of love

Devonmaid xxx

User

Posted 06 Feb 2019 at 03:25

Dear Kentish,

Just sending a big hug to you all.

Love from Vicky xx

Broken crayons still colour

User

Posted 07 Feb 2019 at 18:09

N made it to radiotherapy. Yay.
Stents due to be placed tomorrow morning.
Palliative care plan is to allow the hospital to do everything they can re stents and kidney function (it's back up to around 70%) and to then take N back into the hospice for a recuperation period and to monitor how he gets on with stents and if there are any problems.
Consultant confirmed if stents don't work then nephrostomy tubes can be put back in.
Ct/bone scan and enzalutimide clinic next week.
Consultant pleased to talk to N as previously has only spoken to me because N was too poorly/asleep to talk.

User

Posted 07 Feb 2019 at 18:12

Baby steps - don't forget to look after yourself in the midst of all this.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 07 Feb 2019 at 18:27

Thinking of you both

Bri

User

Posted 07 Feb 2019 at 19:51

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

Thanks Chris

User

Posted 07 Feb 2019 at 22:17

Thanks guys, I really, really want the kidneys to work. Kidney failure was awful to watch and dreadful for N to experience.
I've had lots of people ask if I'm getting support and making sure I take some time to regroup but if I'm honest this is almost impossible to do. Between getting up to the hospital for the 8.30 doctors rounds, getting 17 year old off for an interview at Coventry uni this weekend and managing 15 year olds melt down at school (missed lessons, crying and inability to "take any more of their immature s**t") I barely found the time to take a pee.
The consequence of this is tears at anything that does not go to plan, the ambulance transport allocated a nurse but the ward did not book one so a csw accompanied N but didn't take everything N needed and couldn't give him pain meds. Delays over this mix up meant being late for radiotherapy which meant pain meds taken on the ward wore off before transport for return journey arrived. So I cried, over the transport chap and the lovely nurse he took me to find who found a doctor who prescribed the meds. For every step forward we wander around in circles for a bit first. It's exhausting and upsetting and takes away any time where I could regroup.
N's plan to go to the hospice for a few days will give us both some time to rest. Hoping so much that the stents are a success. Xx

User

Posted 09 Feb 2019 at 04:34

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 :)

User

Posted 09 Feb 2019 at 11:46

I hope the school has put a robust pastoral plan in place? If not, you might want to speak to the Designated Safeguarding Lead or head of Pastoral care regarding the steps they should be putting in place (like ensuring staff are prepared for any meltdowns and handle them with empathy rather than a disciplinary approach). If the pastoral staff have not had training in supporting children who are grieving (or perhaps Mental Health First Aid which was offered free to all schools a couple of years ago), they can contact Macmillan who produce a marvellous guide for teachers and other professionals.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 09 Feb 2019 at 18:51

Thank you Teacups and Lynn,

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

User

Posted 10 Feb 2019 at 17:20

No indication of spinal cord compression but no improvement in bowel continence today. N has been prescribed methylcellulose to bulk up the faeces and see if it improves continence. Some output from urinary catheter so the nephrostomies were clamped shut to see how the stents got on. Good output but then N had a temperature so they opened nephrostomies again and gave him paracetamol pending a discussion on whether they will try again tomorrow and possibly give him antibiotics just in case.
Palliative care nurse came to chat and will relay my concerns over bowels to rest of N's teams. N concerned that he can't always feel himself going.
On to tomorrow.xx

Edited by member 10 Feb 2019 at 17:21 | Reason: Not specified

User

Posted 10 Feb 2019 at 17:46

Thinking of you each day x

User

Posted 10 Feb 2019 at 18:27

Thinking of you too Chris. You don't need me to tell you to stay strong, you are already doing that, every day. You are awesome in your determination. I just want to say N was alright during chemo and HT didn't bother him as much as he thought it would, when his "drive" faded away he didn't really think about it and would just sometimes ask if I was happy. I couldn't care less about the sex if I'm honest and without the drive neither did he, his brain just stopped desiring sex.

Big hugs.xx

User

Posted 11 Feb 2019 at 06:49

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).

User

Posted 11 Feb 2019 at 09:58

Thanks Teacups,
N in relatively good spirits this morning. Consultant going to flush nephrostomies and urinary catheter and then try clamping again accompanied by antibiotics.
You're right about the early questions, even with the tool kit most appointments were more about N 's planned treatment than the actual situation. I feel this really wasn't helped by the lack of a specialist nurse in the early months (because they lost his paperwork). The diagnosis was, "this is very serious it has spread to the bones" I see now that the consultant gave us just the very basics as he had probably gauged our shock and horror at N being so ill without knowing it.
Hindsight is a beautiful thing and I hope our story helps others in the same situation be more proactive/prepared to ask questions so they can better prepare if that's how they like to do things.
N hadn't had any radiotherapy until last week so we can rule that out as a cause of incontinence. Maybe medications, nerve damage, a large mass.
Hopefully they can find a reason and if we are really lucky they'll find something to improve it. Xx

User

Posted 13 Feb 2019 at 10:27

Yesterday was a pretty boring day, just the kind we like 😄 no temperatures, no catheter blockages, nothing medical of any note.
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

User

Posted 13 Feb 2019 at 11:34

What a lovely description of the family time you had. Store that in your memory boxes. Don't quite know what to say about the subsequent consultant visit!! I do think about you each day and i follow your posts even though I don't post a great deal. Take care. You're doing brilliantly. You really are xx

User

Posted 13 Feb 2019 at 11:47

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

Ido4

User

Posted 13 Feb 2019 at 12:39

I’m not a confrontational person at all. In fact I find it very difficult, but I think I’d have followed said doctor and had a word with him outside. Yes , the truth needs to be known , but there are nicer ways of delivering that. I love the KFC bit and that you managed to have some smiles. Stay strong and sending love x

User

Posted 13 Feb 2019 at 14:57

Cheers guys,
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.😭

User

Posted 13 Feb 2019 at 17:15

You are having to go through so much. I really feel for you!

Thinking of you all.

Deb

User

Posted 13 Feb 2019 at 19:52

Sending wishes x

User

Posted 13 Feb 2019 at 23:43

Dear Kentish,

I haven’t had chance to visit here until now.

What a roller coaster ride. KFC moments and giggles. Souless consultants and booking blunders.

You are truly amazing and being a fantastic wife and mom/mum. (I’m a yam yam so we say mom).

I think of you often and send my love for tomorrow.

Vicky xx

Broken crayons still colour

User

Posted 14 Feb 2019 at 05:30

Oh dear, Kentish. I sometimes wonder how consultants would like a close member of their family treated. Our health systems would be so much better if communication and admin was improved. Just reading a forum such as this would provide them with some good educational case studies.

I'm glad to hear the kids and KFC story, and that N felt up to eating 3 pieces. But getting him through the stuff ups, baulking at the scan and the pain must have been hard. And pleased to see that the eGFR is good - yes, take whatever positives you can.

Thinking of you today.

User

Posted 14 Feb 2019 at 10:18

Kentish

I too send my best wishes and hopes that things improve.

Teacups

The problem is that like most Civil Service organisations, the NHS is a silo organisation par excellence. In a lot of cases, they only view their own little area of interest and have little concern about the process that flows across areas and the overall performance. This is why there are so many disjointed systems and processes. The GP / hospital interface is absolutely the worst example of this.

User

Posted 14 Feb 2019 at 11:30

Thank you everyone,

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....

User

Posted 14 Feb 2019 at 11:32

Ooo, and the nephrostomies are clamped....fingers crossed.

User

Posted 14 Feb 2019 at 13:16

Originally Posted by: Online Community Member

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.

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

So angry and frustrated for you 🤬

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 14 Feb 2019 at 20:25

Lynn,

One would like to hope so.
One of the juniors came to find me to say that the consultant wanted to know if I wanted to look at the scans and the report...I replied that it would be pointless without someone to explain them to me. And I have no context or history to put them in. And I wouldn't know what the implications for future decisions are. I can't help but cry when they talk to me, I try hard not to but the tears just keep coming. I explained that what I would like is a potted history of the last few months really and how that relates to what is happening now and why there are differing opinions from oncology/urology, and how that impacts on our decision to go to the hospice and whether he is really well enough to think about coming home again. All said through tears and then the junior cried and gave me a hug, oh dear, she's going to have to toughen up a bit, bless her! I said that I feel like a mug, that they must think we are stupid for not having asked the "right" questions in order to be informed, this is acute this evening as I think about the last few months and how desperate my posts read regarding me trying to get somebody to look after N as a whole, rather than pieces of him.
I apologised for my meltdown from the morning (I can't seem to help but say sorry, even when I don't need to) and Junior said the consultant and they were shocked when they realised how little we had been told about N's results over the last few months and what do I need from them now.
So I think someone might come and talk to us but if they don't, I will talk to the hospice consultant when we get there.
Making the most of it: kids joined us for breakfast, they are both off skiing for the week tomorrow, going to WhatsApp photos and videos for us to watch.
N's nephrostomies were still clamped when I left this evening and he managed to lay on the bed for the bone scan.
Tomorrow, should be a quiet day. One can hope.

User

Posted 14 Feb 2019 at 20:48

If I could wish one thing for you, it is that you stop feeling that you need to apologise. None of this is your fault - you are not stupid or naive and my (personal) view is that you have been treated discourteously by senior professionals in the past. There are amazing people working in the health sector but there are also sometimes ridiculously huge egos who cannot bear to be challenged - I think N was very unlucky and seems to have had a couple of those involved in his care.

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.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 14 Feb 2019 at 22:23

Thanks Lynn,
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.

User

Posted 14 Feb 2019 at 22:40

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

User

Posted 14 Feb 2019 at 23:15

Thanks Bazza, I'm glad to have your support, silent or voiced. You have mine too.xx

User

Posted 15 Feb 2019 at 00:04

I have read your story and think you and your whole family are amazing. It is the little things that matter most like your family time and KFC. A touch of normality in the middle of all that is going on. I wish you all well. My oh has always wanted to just trust his consultant and accept each treatment as it becomes necessary without asking too many questions. I ask some to clarify things but there are many things I do not know. Much has changed over the last year but my oh stays positive and we try to do everything we can. I feel so sad for you and what you have gone through. I suppose a part of me is scared of not being as strong as you have been if things don't go as hoped for us. You are an inspiration and I hope that if there are more treatment options for your husband that may help, that it can be sorted out soon. He is a very brave man and has a lovely family.

User

Posted 15 Feb 2019 at 01:56

Originally Posted by: Online Community Member

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.

I don't think they have any idea how stressful it is to constantly be thinking for someone else, and making such critical decisions. Not sure it helps, but you strike me as someone who is a very clear thinking, organised, compassionate person who is just trying to make life the best it possibly can be for N. You've done an incredible job so far.

Breakfast with the kids sounds good. And videos of their adventures will hopefully bring a smile to both your faces. Hoping that today is indeed a quiet one.

We are having a quiet day which I didn't expect. Were due to go to have a scan this morning, after seeing the pain specialist this week in the middle of a full blown pain meltdown. Had to cancel the scan, as there was no way I could get H into the car for the 5 minute trip to the hospital. I suspect the next step is back into hospital, but we'll see ...

Sending the usual hugs, etc. I'm about to go and eat ice cream (thankfully my latest tests showed my cholesterol hasn't increased too much).

Edited by member 15 Feb 2019 at 01:57 | Reason: Can't get the hang of quoting

User

Posted 15 Feb 2019 at 06:26

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😄

User

Posted 15 Feb 2019 at 20:46

From today's doctors rounds:
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.

User

Posted 15 Feb 2019 at 22:06

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

User

Posted 16 Feb 2019 at 15:09

Thanks for the support Chris. I started off in the "younger men" section and have migrated over the course of 2 years to here. N is by no means the youngest on here and the age gap between us (16 years) makes the family dynamic a bit different in that he has a 15 and 17 year old and he's 56. He's on a urology surgical ward at the moment and the turn over of prostecomy patients is high, and the average age of the last 2 weeks has been late 50's to 60's, however most of their children have been in their late 20's to 30's with heir own children. It's been quite hard emotionally to watch knowing we aren't going to have that. These things don't really cross your mind but when they do it makes us so sad.

On a more cheerful note (sorry that was a bit depressing )

Bed available at the hospice and held (unless there is an emergency admittance)for Monday afternoon. Urology agreed N should have his catheter changed while he is an inpatient in case there are any issues, this will probably be tomorrow. Consultant this morning also agreed that keeping him so he can go to the clinic was in N's best interests as it will be less stress on N than being transported back and forth.

N's bowels seem to be back in operation, yay and he is more comfortable. I have popped home to put some washing on (I can barely contain my excitement. ..)and then I am going back with his wheelchair so he can have a practice at sitting up in it.

Both kids have sent pictures of beautiful mountains (one's in Austria, the other's in France) and are already having a great time. The house is as tidy as I left it 😂😂😂😂. No one to blame but me for any mess this week.xx

User

Posted 17 Feb 2019 at 19:55

A bit of a mixed bag today. Looking promising this morning and registrar came to change the catheter, which he found really easy because he only put a 12 in......I asked if he thought the clots would be able to pass, yes he said and it will be more comfortable than the 16.
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.

User

Posted 17 Feb 2019 at 20:43

Don’t kick yourself... we put our trust in the medics and trust they know what they are doing. Sometimes though if makes us wonder. I feel your frustration.

Hope tomorrow is a better day

Take care
Bri x

User

Posted 18 Feb 2019 at 09:25

Hope today has been better than the mixed bag of yesterday. I know how hard it is not to kick yourself, but how are we supposed to be able to second guess every decision in real time while at the end of our tether. Hope N is in less pain now, and that clinic/transfer to hospice went OK.

As expected, we are back in hospital. And now have a reason for the increased pain - more fractures, dammit. Add a UTI, one quite confused husband and you get the picture. Grrr.

User

Posted 18 Feb 2019 at 14:37

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😩

User

Posted 19 Feb 2019 at 18:23

N's cancer symptoms are like a seesaw, sometimes violently swinging up and down, other times more gently.
1ltr of fluid given yesterday has brought hb down from 84 to 72, if it improves tomorrow they won't transfuse, just let it climb by itself.
Sodium only improved by 1 point so endocrine team have suggested to go back onto the demeclocycline whilst as an inpatient.
Apparently the kidney failure masked the SIADH, because they were struggling N was not excreting the sodium like before, now the kidneys are working well (yay) the SIADH is a problem.
Fluids temporarily restricted to 1.5 ltr per day to help with improving the sodium, N not happy as has been drinking whatever, whenever he likes which has been lovely. Plus not great for clots etc and keeping the bladder and kidneys healthy.
Haematuria appears to have stopped, pain management have increased break through pain relief to 10mg oxycodone every 4 hours which seems to be working.
Hospice put back on hold until he's stable, not going to be this week 😕

User

Posted 20 Feb 2019 at 16:35

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

User

Posted 20 Feb 2019 at 18:36

😱 I missed the new baby?????

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 20 Feb 2019 at 20:18

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.

User

Posted 20 Feb 2019 at 20:48

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

User

Posted 20 Feb 2019 at 20:49

Oh Kentish,

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.

User

Posted 20 Feb 2019 at 21:36

Thanks.xx

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