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User

Posted 03 Feb 2019 at 02:19

Dear Kentish,

What a nightmare. So cruel to have extra hassle too. You have been on my mind. Thank goodness that you have your mum and sister in law to help out. It is incredibly hard for you not to be with N and my heart goes out to you. I hope that he improves greatly and that you are better too. Hopefully yiu can both have a much needed lovely afternoon together.

Love and hugs,

Vicky x

Broken crayons still colour

User

Posted 03 Feb 2019 at 09:01

Kentish

Sorry to hear N is back in hospital and you are under the weather as well. I am sure that N is getting the right care, the squeezy irrigation bottles you mentioned before are presumably optiflo, not sure if it would be relevant but there a citric acid version that is supposed to help reduce the amount of crustation in the catheter and reduce blocking. Might be worth asking his care staff.

Thanks Chris

User

Posted 03 Feb 2019 at 12:48

I know that hospitals/hospices send people home with the best intentions but I think you have always had your doubts, I know i would have, given the complex nature of N’s problems. Ending up in hospital was not ideal and I’m so sorry about it. Glad to see you are on the mend, it must feel dreadful not to be able to be there. Thinking of you.

Love Devonmaid xxx

User

Posted 03 Feb 2019 at 13:16

Got a call at 8.30 this morning from Nigel that he was being taken to have tubes put in his kidneys as they were now completely blocked.
Rushed up to the hospital in time to accompany him to "intervention"
He has had 2 nephrostomy tubes put it and had another ultrasound. His kidneys are completely blocked and we are waiting for a doctor to tell us the "plan" .
Other than being absolutely shattered from lack of sleep, N seems quite positive that he'll be able to move forward with treatment.
This is what was offered last time we were here and N declined to be interfered with and chose the hospice. This time he feels like he may not be done yet.
Thank you for your support everyone.

Chris, they do the citric acid in the hospice and hospital but won't let me have it at home.x

User

Posted 04 Feb 2019 at 20:27

Hi Kentish

John had this too, he had emergency surgery for retention to insert a supra pubic catheter (SPC) then a Turp, then two catheters, hoping to remove the SPC. It disnt work, so they inserted kidney stents for a few weeks and give him RT to the prostate to see if that helped, it didn't. Then a decision was made to move his ureters to the top of his bladder, can’t remember the name of the operation, but it was quite something and saved his kidneys, which were, we told on the verge of catastrophic failure at the time of the op. Anyway, none of this has meant that the SPC has been able to be remove but it has stopped the kidney failure and is therefore a complete success. our consultant is from Egypt where they do this operation often and so was a safe pair of hands. I wonder if this is worth a mention?

I can supply the name of our consultant if necessary, I’m sure he’d be delighted to have a chat with N’s doctors if this was a viable option.

With love

Devonmaid

User

Posted 04 Feb 2019 at 22:02

Devonmaid, yes please, I'll take anything!

N is the most communicative and lucid he has been for weeks, perhaps this is because his kidneys are working better with the nephrostomy tubes ?

Urology didn't want him to go for radiotherapy planning tomorrow but onco insisted. N is anxious about travelling ( its at another hospital about 10 miles away) but wants to get on with it. I came home and radiotherapy rang and asked why we had missed his appointment !!!!!!

The letter they sent says it's tomorrow and next Monday is the treatment. But they had him booked for today and treatment for thursday, I wept, the poor lady on the end of the phone "take some deep breaths, we can sort this out."

She said to take him anyway tomorrow and they will fit him in somewhere, also his bone scan is booked for Thursday too, she said to bring the letters and she will sort it out as his radiotherapy is very urgently needed. Sometimes I can't breathe, the despair and anxiety creeps up on me and is like a crushing weight. I just really, really want a little break for us all from this. Just to have a few weeks where there isn't a catastrophe.

I need an early night but now I'm fretting over whether he'll be called down for his stents when he should be at radiotherapy /bone scan or whatever...ffs. life is s**t sometimes😭

User

Posted 04 Feb 2019 at 22:12

Ureteral reimplantation?

User

Posted 05 Feb 2019 at 04:20

Oh, no, Kentish. This blasted roller coaster you are on isn't stopping is it. It is hard enough for me to read the latest update, let alone you having to live through it. I'm not surprised you are finding it hard to even breathe - but have you found enough breath yet to turn the air blue?

I'm pleased at least to read that N is the most lucid and communicative he has been for a while (and glad you got into the hospital). Is urology's plan to now insert stents? I hope that the planning for the radiotherapy does actually happen - I would have cried on the phone too. More than frustrating, especially when at breaking point.

I hope you did get some sleep. Hold onto that comfort blanket - it is impervious to water, so cry all you like into it.

User

Posted 05 Feb 2019 at 08:58

Hi Kentish,

I am relatively new here, but just wanted to say I'm so sorry for the rough time you and N are having. I'm praying you get a break.

Sending best wishes to you both

Michaela x

User

Posted 05 Feb 2019 at 19:36

Thanks for the support Teacups and Michaela,

1 down and several to go.
We made it to the radiotherapy planning appointment at the other hospital. A lovely nurse accompanied N on the transport and looked after his medical needs. Checking his nephrostomy tubes and catheter everytime he was moved.
Creatinine down from over 500 yesterday to 250 today.
N feeling good about the plan and less nervous after we watched a video of the machine on YouTube.
Agreed by all that radiotherapy is to come first and then the stents, so they may be done on Friday if he is well enough.xx

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

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