Making the most of it

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Posted 17 Jan 2019 at 21:28

I popped on to see how things are with you and Nigel and I’m very surprised to see that you will be taking him home. You honestly never know with this illness, just when you think the fat lady is singing she stops and things change again. on the old forum we used to talk about locking that fat lady in the cellar! Somehow we always kept a sense of humour, even in the worst of times.

I dread the practical care you are talking of, I'm really bad at that kind of thing and am just hoping that some part of me will just take over when and if that is needed. Its the lack of dignity that bothers me most, it seems wrong between husband and wife but maybe that's just because i haven't faced that yet. John has an SPC so we have lots of pee accidents and we've had a number of nasty laxido based troubles due to terrible constipation problems so maybe that is preparing me. Oh dear! For bettwr, for worse,in sickness and in health and all that.

John had a terrible pain last night, it was in his heel, like a screwdriver boring a hole he said. a referred pain no doubt. i was in the other room babysitting so missed it, he didn't have his morphine and didn't call me. The hospice nurse has advised loading a syringe to keep by the bed (the night bag contraption makes it dangerous to get out of bed at night) and that simple idea made so much sense. I'm glad we have her to help.

i wish you a quiet night, I'll be thinking of you all.

love Devonmaid xxx

User

Posted 17 Jan 2019 at 22:01

Oh Devon maid, I very quickly put away my feelings about pee and poo when I saw how helpless nigel felt. I think your right, for most people you just go into autopilot and get on with it.

I have found tesco ultra free spirit incontinence pull ups to be the most effective at containing things. £8 per pack of 12 I think. We have a pack of dog poo bags in both toilets and a pack of water wipes as well, these are unscented baby wipes, just water and citric acid I think. The pull ups tear down the side so there is no need to pull them down and create more mess. After the first few changes, we established a method that was as quick as possible.

I'm still not cutting his toenails though !!!

I am amazed at his progress, as is everyone around us. If we can just keep things steady we may get a couple more months yet.

Thinking of you too and everyone in this life, may we all find moments of peace.xx

User

Posted 18 Jan 2019 at 02:46

Yes, Devonmaid, auto pilot does tend to kick in when you need it to. I am surprised at how many things I can do which I would never have dreamed possible - but it did take me a while to put my practical hat on and work out a system of getting everything done in the most efficient and least stressful way we could. And somehow it is one of the things I can do now as a wife which has a chance of improving my husband's quality of life - at this stage it would be more intrusive if we got carers in, and we would have to work to their schedule not ours. We have learnt to manage the SPC over the last few years, but still have incontinence (of both types) to manage. Managing the pain and the mobility issues are another story. And I don't do wounds and blood well at all!

Kentish - it is wonderful to hear that there has been some improvement for Nigel. It sounds as though you are preparing as best you can for a return home, if and when that is feasible. I too found the most overwhelming thing was having to be responsible again. Even though I was doing most things for my husband while he was in hospital, the thought that there was backup there was a relief. On a more practical note - do you have or will you have a hospital bed at home? We don't use it for sleeping (yet), but my husband can't walk well at all now, so we use a shower commode to shower him, and from there onto the hospital bed so that I can get him dry and clean and change him. A godsend for my back. I watched how the nurses did it in hospital and we learnt the rolling trick - that has helped a lot. We can also raise the height of the bed so that he can use his walker - it is the only time he can do that. We haven't had to use a hoist yet, but that day may come - will one of those be available for you? I'm with you on all the practical things you have set up in the bathroom, but would also add disposable gloves and some hand gel. And I use a double layer of waterproof mattress protector on the bed (I just cut a single one up and place a large piece of that under the regular tuck in one - has saved us on a few occasions). Those slightly plastic backed big tissue like sheet things are handy too (called blueys here).

Since I am obviously coming out of the woodwork a little, I've altered my forum name from that random set of letters I chose a few years ago!

Love to you both.

User

Posted 18 Jan 2019 at 08:54

Hello Teacups,
Thank you for the advice, it really helps to know how others cope with this stage/level of care.

Sadly, Nigel is unlikely to be going back upstairs at all so we are having a hospital bed delivered for downstairs. He already requires a lot of care so I have have requested the carers come in to support me.
We are going to have a bath board, for him to sit on if I shower him but again, we might just be washing him in the bed. I will be relying on the beauty of Amazon prime to deliver single sheets and little fleece blankets on next day delivery when and if we get the go ahead to come home.
I have blue gloves, hand gel, wipes but I haven't bought any aprons....I'll add those to my list.
Also, sippy cups, he's back to using proper cups and glasses now but in the night a sippy cup prevents wobbly hands spilling the drink.

No-one seems inclined to scan Nigel for spc presumably because the effort of the scan outweighs any benefit that may be gained from knowing. This is depressing but he's not bothered so I haven't persisted.

Off to the day centre this morning, it's within the hospice so he can go back to bed if he wants but it'll be nice to see something different.

User

Posted 18 Jan 2019 at 10:33

I like Teacups much better than random letters!

The system may be a little different in Australia and nothing can be relied on in England anymore but what is supposed to happen is that the NHS palliative care team or hospital / hospice staff liaise with adult social care at the Local Authority to ensure a proper medical bed, commode, anti-bed sore inflators and any other big equipment is provided. I have never been given a hoist because by the time each relative was in the end stage, all care was given on the bed but I know that there are men with SCC who have been loaned a hoist. The occupational therapy and physiotherapy teams should also be consulted.

We had to buy a bath lift and mobility scooter because social care couldn't provide those.

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

User

Posted 19 Jan 2019 at 13:57

Thanks Lynn,
The OT and the hospice team have organised a Fast Track Care Package. This includes ordering a bed, recliner chair, walker, small wheelchair and other necessities to be delivered to the home in preparation for Nigel's return.

There are some days where I just cannot comprehend how many thing have gone wrong in terms of administration /communication for us.

I rang the hire company this morning to arrange the delivery date and they haven't got Thursday's request /order......aaaaaaaarrrrrrggggghhhhh
I will have to wait patiently until Monday morning and then find the OT and ask them to request it again.
In yesterday's post was the form the doctor had completed for Nigel's medical exemption certificate, it has been returned for us to sign. I rang them to ask if they had had a covering letter from our gp explaining the error and why Nigel hadn't signed it. They couldn't give me any details but said the gp should have signed it and then explained why they had signed it for the patient.
They requested I scan and email my Power of Attorney, included a covering email explaining why the fine should be cancelled and include the fine reference number etc. This will take 2 -3 working days and then I can phone and discuss his account. OMFG, I am very close to breaking point, these seem like insurmountable barriers. I hate that I'm losing my s**t over what probably seem like small things but they are just 2 more things that I can't seem to get right and noone else seems to be able to do it for me. I'm trying to stay calm but I really want to shout at somebody and tell them how useless they are.

User

Posted 19 Jan 2019 at 18:37

Kentish

You are doing a fantastic job looking after your OH, I am sure you will not let the shortcomings of others break your spirit and determination to do the best for your oh. Keep going gal.

Thanks Chris

User

Posted 19 Jan 2019 at 18:56

Thanks Chris, a couple of friends came to visit and let me vent, the air was blue!! I'm at home now contemplating whether it is too early to go to bed (6.55pm) :)

User

Posted 20 Jan 2019 at 01:41

Kentish, I should know this but have you applied for PIP from the DWP? I think N is probably entitled to it under terminal rules.

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

User

Posted 20 Jan 2019 at 06:03

Aaaargh indeed Kentish. When you are trying to keep all those plates spinning in the air you don't need anyone else to not follow through properly. No wonder the air was blue - but glad to hear you had some friends to unload on. It makes a difference (as I find does furiously typing an email to a friend - the speed seems to help). I should refrain from mentioning that the consumption of ice cream, or pehaps chocolate assists me, but not my waistline.

How has N been? Did you get to the day centre successfully? And did you ever get to the bottom of the PSA figure you were being given and what the previous ones where?

And Lyn - thanks, yes a much better name. And yes, as with most things we have similarities and differences in treatment options (Radium 223 not yet funded here), scanning (yes, PSMAs available, but not funded), palliative care options. All complicated by questions of whether you use the mostly excellent public system or use your health insurance and the private system, and sometimes fall in the gap between the two.

Hope you've had a trouble free weekend, Kentish, and that I all concerned pull their fingers out on Monday and get it sorted. As others have said before me, you are a star.

User

Posted 20 Jan 2019 at 11:51

Originally Posted by: Online Community Member

I should refrain from mentioning that the consumption of ice cream, or perhaps chocolate assists me, but not my waistline.

I find chain smoking helps without affecting my weight but it tends not to be a very acceptable solution these days.

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

User

Posted 20 Jan 2019 at 12:11

Its almost unbelievable how these admin things can be so difficult to resolve. the lack of compassion also seems impossible to bear. I dont know if the macmillan nurses could offer to help here, I’m pretty sure that they can help with a lot of the admin type burdens. They really are the straw that breaks the camel’s back.

i too am glad that you have good friends you can offload too, i genuinely think it makes all the difference. I have been thinking about you this weekend, especially as my hubby has been poorly. I can’t wait for tomorow to come and a new treatment to start. The fast deterioration is frightening to watch.

Sending you love and hugs and to Teapot too xxx

Devonmaid xxx

User

Posted 20 Jan 2019 at 13:08

Thank you ladies,

Lynn, N qualified for the higher rate back in August 2017, that was when the cock up of his paperwork not being passed on to the specialist nurses was discovered. I fought hard for it when at diagnosis he had actually qualified for the ds1500 but no one had done it. An omen of administration errors to come I think!

Teacups,
We made it to the day room, did some armchair exercises to music, N's face😂 "wtf"....we stayed for about 30 mins and then he'd had enough but it was nice to do something different.
The consultants come around on a Tuesday, so I'll have to wait for the psa question to be answered then. Any opinions on such a fast climb if I'm correct?
N remains about the same, eating a little bit, drinking plenty, enjoying his morning and afternoon coffees enormously. He's able to sit himself completely upright in bed and with a walker can do a few steps. His legs are very unsteady and it totally wears him out so he'd rather just get in to the wheelchair and be pushed around.

Devon maid,
I am going to ask the welfare team at the hospice to help me in the morning with the prescription penalty issue, it's just sods law that it's always the weekend when things don't go to plan isn't it!
I have come home for a few hours to move the furniture around, N is able to use his phone again and said when he wakes up from his afternoon nap he'll ring me. I have an army of friends and family helping, sometimes too many!!!! But it makes me realise how much everybody wants to help and that I should let them. They can't do the stupid administration for me but they can do so much else.
Xx

User

Posted 21 Jan 2019 at 20:28

N had a relatively good night, needed his catheter flushed at around 5 am which wasn't nice and the nurses have decide it needs to be done at 9am and 5pm everyday regardless to keep it clear of clots.
One thing they can't do in the hospice is use the big syringe to push saline into the bladder and then pull clots out, I am going to ask tomorrow if this is a bookable procedure at the urology dept as it may require doing shortly and I don't want to take him in through a&e again, ever.
Bed etc is arranged for delivery on Wednesday, bloods taken today, results probably tomorrow and possibly discharged Thursday. I asked N to insist that he didn't leave on a Friday, I am so anxious about taking him home already and I don't think I can cope with it being the weekend too. He looked confused when I asked him but when I explained that I was worried we'd get home and if he didn't feel well everyone would have gone for the weekend (there's a skeleton crew at the hospice on weekends) and I would have to rely on district nurses who may not be able to resolve the issue and would ring an ambulance he agreed that possibly Friday was not a good idea. It may sound irrational to some but when every crisis has been at the weekend I feel too stressed to start our return on the Friday.
N had a goodish day, enjoyed sausage and mash for lunch and a chocolate biscuit for tea, got into the wheelchair and used the walker a little bit too.
Didn't want me to stay again, so third night in a row at home.

But oh my days, the 15 year old has got nits!!!!!!
She is horrified, ranting about disgusting people on the bus, so instead of an early night, I spent an hour with the nit comb😅. Sometimes I wonder if I did something bad in a former life, we also had another prescription fine in the post today, welfare lady doesn't work Mondays so I will talk to her tomorrow.

I'm keeping my chin up but the swearing is really bad.....

User

Posted 21 Jan 2019 at 21:43

Ah weekends, they are just a big worry for sick people. so far our bete noir has been New Year’s Eves, 3 horrors so far in this journey, ghastly experiences mainly. But many more weekends in a year than NYEs! I think you are very wise to take that precaution. I went up to the hospital pharmacy today to collect the enzalutimide and they swore they hadn't received it. We were sent home to await a call that never came. I rang oncology in the end and of course, it was in pharamcy, I went back and the while thing started again. sigh. I did manage to get the meds in the end but what a palaver. The queue was out of the door too, i think I've got a brownie badge in waiting patiently now.

OMG, the nits! I remember getting them at school and wanting to poor boiling water over my head,luckily my brother stopped my lunacy. Disgusting things. You poor daughter. As if you haven't enough to deal with.

I hope things go well for you both for the move home, I feel your trepidation from here and am not surprised, it must be so scary for you.

Sending love

Devonmaid xxx

User

Posted 21 Jan 2019 at 22:29

Devon maid, I feel your very British patience being tried😁😁.

I decided tonight that if they want him to come home Friday I am going to speak with my feet and leave. I don't think any amount of support can combat my anxiety over friday nights and I'll just be worried sick all weekend which won't be nice for anyone (I get very shouty/snappy/irrational).

I feel I have mostly coped up until this point but I admit I am struggling.

I'm really dreading the next time I have to go to the gp's or the chemist to collect prescriptions. Your dance back and forth today sums up the experiences of many.

I hope the Enzo is effective quickly, fingers crossed for a swift improvement for hubby xx

User

Posted 22 Jan 2019 at 01:20

Originally Posted by: Online Community Member

I find chain smoking helps without affecting my weight but it tends not to be a very acceptable solution these days.

Lyn, if I was any good with emojis I would post the appropriate one here, but I'm not, so I will leave it to your imagination.

User

Posted 22 Jan 2019 at 01:39

Kentish, not taking him home on a Friday sounds like an excellent plan. Anything that will go wrong will inevitably happen on a weekend, long weekend, public holiday, Christmas, Easter. And I know where you are coming from with the anxiety about bringing N home, and the effect that has on the snappyness/irritability front. I am most likely to lose the plot when I am anxious about H's state of health and my ability to cope with it, and this is usually much worse if we add in extreme tiredeness and frustration over a period of time. Then it is tears all round.

You have had so much to deal with with all these bladder/clots/catheter issues - it must be a nightmare. Although H has had a catheter (SPC) for a long time we thankfully haven't had these problems. We did however have a short spell where the balloons burst and the catheter dropped out, so we had to make quick trips to Emergency. One of the kind nurses did suggest that I learnt to put one in, but I wasn't having that!

I did laugh at your description of your visit to the day centre. Exercises to music - the face on my H would have been a sight too (and we probably would have wheeled around and reversed straight out). His nightmare scenario though woud have been if there was any mention of bingo.

I have been heartened by your descriptions of the improvement in appetite for N, using the chair and the walker, and the increased awareness, and the ability to use his phone. All of these sound like really good signs, and I must admit brought a tear to my eye. We seem to have reached a nice plateau in the past couple of weeks, which is much better than we were a few months ago, and it is lovely while we have it.

But yes, it is a struggle, isn't it. And no matter how much support you have from family and friends, it is a very lonely business. Wishing you a few peaceful days to set you up for the return home, with no extra dramas or frustrations (and no more nits, of my goodness).

User

Posted 22 Jan 2019 at 16:36

I dread the thought of a catheter falling out! The nurses are going to show me how to do "bladder maintenence " and I will do this morning and night with N. I am confident I can do that but if there are any clots that cause more problems then it will be district nurses or hospital.

Everything is still progressing towards a move home. Thursday is the chosen day :). Still waiting for blood test to come back today but as he's been stable if not a little better over the weekend then they aren't expecting anything to be much worse.

We had an onco appointment booked for 28/1/19, as he is returning home they want me to contact onco to see what they would like N to do, if anything. It's unlikely that the Abiraterone will restart but you never know eh?

We had a long list of questions about the transition and how to come back to the hospice if necessary, the lovely nurses and doctors took their time to answer every one and make me feel more confident that we are supported when we go.

N is going home by wheelchair transport, he is booked in for a review at the hospice in 2 weeks to see how things are going and has been referred to the wellbeing and therapy centre (day hospice) for an 8 week programme, which just means we go every Friday and waggle our hands at some music, natter and although there isn't Bingo 😄 there is a quiz! It's all about keeping in contact with the hospice so they can monitor N and help when we need it.

Lots of deliveries due tomorrow so I've come home to clear up (again) :)

User

Posted 22 Jan 2019 at 17:24

Kentish

I have had a catheter in my bladder numerous times that equate to about two and a half years, despite pulling on the catheter a few times I have never had one fall out, when changing my catheter there is sometimes only 2 of the original 8 ml of water left in the balloon. As long as the catheter is correctly fastened to the thigh strap there should be no concerns, the secondary strap should be in the "Y" of the catheter.

Probably to simple to be the answer to the blocking but is N's bag below the level of his bladder. I drink around three hundred ml of water last thing at night and produce between 500 and 1200 ml of urine overnight. Constipation can also be a cause of catheter blocking. Keep up the good work.

Thanks Chris

User

Posted 22 Jan 2019 at 18:10

Thanks Chris,
N has had a night bag since he went into hospital, the nurses are going to put a leg bag back on tomorrow, which will make shuffling about a bit easier.
He bypasses his catheter everytime he opens his bowels and this is when the blood appears. His urine is a good colour but the blood from his prostate pools around the catheter in his urethra and the clots come down the outside of the catheter tubing :(
Eventually the blood backs up into the bladder and then the odd clot appears in the tube.
The bladder maintenance is a small bag of fluid held up and drained into the bladder, they haven't had any problems getting this into the bladder which is good and shows his catheter isn't blocked with large clots, I'll be doing this twice a day, the district nurses do the squeezy bottles if it's more challenging but if it needs the big syringe it will be off to hospital.
I've got the thigh straps and bag straps ready to go as he's going to try and put trousers on to come home. :)

User

Posted 23 Jan 2019 at 16:03

Everything has been delivered, minor issue with a wonky leg on the commode which will be resolved tomorrow.
N is very tired today, probably from all the organising that goes on around him, he's interested but it's hard to follow what everyone is doing and when.
I've been shown the catheter maintenance once and I will have a go at it this evening, I'm sure I'll get the hang of it quickly doing it twice a day. I suggested to N he might like to do it himself but he didn't look particularly willing!
Today's administration cock up is Carers Allowance. I have been on unpaid leave since the end of October but as I was paid £6, yep, £6 over the threshold in November I didn't qualify for November or December. I have been paid for the week before he went into hospital and then a bright spark who called me in Jan to ask for December's payslip has decided in their infinite wisdom that because he is in a hospice, he won't be coming out and closed my claim completely......I get the threshold has to be somewhere and although infuriating, I can just about swallow the injustice but to assume they can close his case completely. ....aaaarrrggggh.
The response was that they will listen back to the phone call to work out why the operative did that, I feel they are looking for something I said that can be interpreted as me saying he won't be coming home. Then I will have to begin a claim all over again.....this life is so hard to navigate at the best of times, today I feel like giving up on admin completely it's too exhausting.
On a more positive note, the hospice doctor encouraged N to attend the next onco appointment on Monday, it may be just to tie up ends but one can hold a glimmer of hope that symptom relief is still on the table if it's needed, maybe some radiotherapy to the prostate to reduce it if he's fit enough. I have booked hospital transport as I'm not sure he'll be able to get in a car.
Hoping the move home tomorrow will be smooth and not too tiring.

User

Posted 23 Jan 2019 at 23:05

Dear Kentish,

I am so glad that everything is all set up ready. Everything has been sorted and you're an absolute super star. I really hope that everything goes smoothly tomorrow - you all bloody deserve it!

Love, happiness and peace to you all,

Vicky xxxx

Broken crayons still colour

User

Posted 24 Jan 2019 at 05:19

Crossing my fingers and toes that the move home goes well, is as stress free as it can be, and that you both finally get to relax.

Damn and blast that admin.

User

Posted 24 Jan 2019 at 09:11

Wow, reading what you are going through is exhausting enough, I can only tell you how much I admire you for your forebearance. The admin side is appalling, I also thought that carers allowance was done on a weekly basis, argh! Just what you don’t need especially as its such a small amount.

I must admit I can hear your worry about N coming home today and I can totally relate to it. Managing the day to day care of someone so sick on your own is so tough. My heart goes out to you, it really does. I will be thinking of you.

with love

Devonmaid xxx

User

Posted 24 Jan 2019 at 19:57

Thank you everyone for your words of support.
WE ARE HOME!!!!!!!
Just a couple of hiccups along the way, transport not arriving and having to find a wheelchair cab at school pick up time, needing to pick up sleeping tablets (zopiclone) from chemists as there wasn't any for N to take home from hospice but apart from that it went OK.
We have just done our first bedtime routine of catheter flush/night bag/remake bed/bring my camp bed downstairs etc.
I have set alarms for the drugs, set a reminder for the fentanyl patch and I am bloomin exhausted.
It's only 7.50pm, too early to go to bed really so I am pottering about trying to regain some order in the rest of the house.
My lovely mum cooked the dinner and has offered to cook every night. I am soooooo lucky. Otherwise it's going to be toast, toast and a bit more toast I think.
The carer arrived about 10 mins after we got home, she would also have been the bedtime one but we are allowed to say no thank you to any of the bookings so N said he didn't want help tonight, he just wanted to settle down.
They will be back in the morning to wash him and get him ready for the day, then roughly 3.5 to 4 hours after that if we want them. It's much more flexible than I thought it would be.
I am hoping we are not first in the morning😄 so I can have a lay in. The kids are going into school late and we are going to have breakfast together. McDonald's I believe 🍔

User

Posted 25 Jan 2019 at 13:04

What a wonderful mum, that will make a huge difference.

N will be glad to be home.

Sounds like the care package is good.

Enjoy your breakfast!

Ido4

User

Posted 25 Jan 2019 at 17:55

A pretty good day, not Maccie d's but a local independent coffee shop breakfast instead, yay the kids have grown out of the Golden Arches allure 😄
N had a toasted cheese sandwich with the crusts cut off, this is important because he wears dentures and crusts are his enemy (even with polygrip).
The carers have been 3 times so far today, first visit this morning at 9am coincided with the breakfast so we agreed N would have a wash at lunch time, when they arrived at lunch he was fast asleep so we left him. They came back at 5pm and washed him then. It's all pretty relaxed and totally about what N wants or doesn't want to do.
I've managed to do some reorganisation and feel a little more feng shui, though being home with the kids is not relaxing at all....
We have a caravan by the sea, my profile pick is a pretty good representation of the sunset there. The site reopens on March 1st, N's goal is to be able to get in the car so we can go there, either before it opens and just be at the sea or when it opens and sit on the decking.
He's still got goals and I am hopeful we might achieve them.
Tonight's goal, watch an episode of something we've been recording without falling asleep. 😊

User

Posted 27 Jan 2019 at 02:16

I've been so pleased to read your updates, Kentish. So many positives there (kids growing out of the golden arches for one). Am hoping you are all now settling back comfortably into being at home.

The goal of seeing the sunset at the coast sounds wonderful. We can get H into the car with some effort, but his pain levels mean that any uneccessary trip is not possible - so sad, but we are kind of used to it as it has been this way for years.

Good luck for the visit to the oncologist on Monday. And for the day therapy centre later - a quiz would scrape over the borderline into acceptable here, I think :)

User

Posted 27 Jan 2019 at 09:57

Morning Kentish

i hope that you are coping well with everything and the weekend is turning out to be ok. I’ve been away as grandson was born Friday at 11.52, all natural this time except for a trip to theatre after (not sharing those details). Daughter likes mum to attend (second time now) so absolutely shattered after that experience. Hubby hasn't been well enough to see him yet, but little Indy is now home so hoping to get him over there today with luck.

always thinking of you

Love Devonmaid xxxx

User

Posted 27 Jan 2019 at 14:31

Teacups, N is planning on trying to get in the car later today to see if it's possible, mostly because we had to wait so long for the transport. If he can manage it, I'll bring him home from the appointment and cancel the return journey. He's not in pain which is a blessing but he has very little leg strength left and very poor balance. I don't know if this is just the muscle wastage from his recent illnesses or something else.
I've just had the confirmation of his place for 8 weeks at the day centre, they do provide transport for this and hopefully he doesn't have to wait long to be brought home.
I'm absolutely knackered, he's not slept at night undisturbed since we came home. He had a sleeping tablets one night and anxiety meds a different night but he kept waking up.
He also hadn't "been" for 2 days, last night the movicol/ laxido took effect😯 and we're on 8 deposits and counting since the early hours of the morning.

Devon maid
Congratulations to you and your family, we have some friends and family with little babies and they are the best distraction. I hope hubby gets to meet little Indy soon.

Xx

User

Posted 28 Jan 2019 at 03:57

I feel for you, Kentish. Disturbed sleep, on top of the anxieties of the past months is absolutely knackering. And it is very hard to bounce back from it. And the after effects of the laxido - aaaargh, you have my sympathies.

Hope you sort out the car - it will be much more convenient than having to either wait for transport or hope like hell that it turns up. But, transferring is hard work. H still has reasonable arm strength (at the moment), but his legs have no strength, and one doesn't work much at all. So to get him in the car it is lounge chair to wheelchair, then wheelchair to the car and transfer. If we get the wheelchair side on to the car seat he can push himself up on his arms and slide across (sometimes with more success than others!). If you can get some advice from the allied health team at the hospice they may be able to work out the best way for you to do it. There are a few aids - grippy handles that clip into the door lock, and a turntable thing for the seat, and slide boards. We didn't think they helped in our case, but it is worth exploring. And is your wheelchair heavy? Ours is fortunately fairly light and can be taken apart a bit to get it in the car, but there are tricks to lifting it in too.

User

Posted 29 Jan 2019 at 08:14

Teacups, more of our lovely friends stepped in to help yesterday to get to the hospital :) A firefighter and a policewoman, both with great manual handling skills. The best bit was using a black rubbish sack for slithering across the seat! N was actually able to stand from the wheelchair and then shuffle a little and sit straight onto the seat. It's a Honda Stepwagon, the seats are very high, not great for shorties like me but N has no trouble. Our friends came with us and waited then helped to get back in the car, followed us home and helped put him to bed again. I feel so lucky to have this support.

We met a new onco yesterday and our appointment was not one of doom and gloom, yay!

Radiotherapy to be booked for 1 zap of the prostate to try and improve bleeding and relive pressure in that area on the bowel/urethra etc. Onco thought given N's history so far he is likely to suffer some side effects such as diarrhoea etc.

Ct scan and bone scan booked to see what's what as psa has increased from 33 mid December to 203 last week.

Enzalutimide to be started in a couple of weeks, this is now available because the Abiraterone was working, psa Oct was 80 and on Abiraterone it had come down to 30'see but onco felt that N's problems in the last few weeks were due to poor tolerance of the Abiraterone in conjunction with SIADH treatment. So we get another drug, if N improves enough to start it.

Onco felt N will improve as his blood tests showed he was fairly stable now in terms of hb, sodium, potassium etc. Alp was 240, down from 400ish.

Onco has a special interest in genomic treatments and gave me details.of the Barcode2 trial to go through with N, again, if he is well enough. He certainly isn't fit enough to travel at the moment or have any chemotherapy (carboplatin) if he was identified to have a suitable gene mutation for it.

N's legs are very painful this morning from yesterday's exertion but he is keen to get moving again, so the next couple of weeks will be focused on trying to regain some strength.

User

Posted 29 Jan 2019 at 11:45

Kentish

what a lovely, hopeful post this is. An oncologist that can give hope is a thing to treasure! John has had a week on enza so far and is ok so far. He’s not exactly well but I’d say better than he was so I’m hopeful for a decent response. We managed a walk in Cirencester yesterday so needs a day’s rest today. It’s wonderful that you have help with N, with such friends in your life at least you have decent people you can rely upon. Sometimes that’s the best we can ask for.

Hoping you have a good day today

Lots of love

Devonmaid xxx

User

Posted 02 Feb 2019 at 03:13

Was so pleased to hear how well your visit to the hospital went. Wonderful to have supportive frineds, and especially wonderful to have capable supportive friends. And what positive feedback from the new onco. So hope that with continued improvement N can start on the Enzo, and that it helps as the Abi did.

I guess you'll be anxious awaiting the scan results, but at least they will give you some knowledge of the current state of play.

How did N recover after the hospital trip? And have you been for the day therapy centre visit yet? Or was it scheduled on one of the days of appalling weather I've been reading about you having???

Pleased to read Devonmaid that you got a day out too. We've finally had some cooler weather and could venture outside without frying for about the first time in a month

User

Posted 02 Feb 2019 at 16:12

Oh Teacups,

Shortlived hope indeed. N bleed profusely from his prostate Tuesday and Wednesday and Wednesdays blood test showed his hb was down to 70 and his gfr (kidney function) was 12. Dreadful numbers. Ambulance back into hospital for a blood transfusion Thursday evening and waiting for an ultrasound of his kidneys. But as per bloody usual, it's the weekend, nothing happens on the weekend here it seems. Ultrasound will probably be Monday. To top it off , I've come down with a sickness bug, the first time I've been too poorly to look after him and he's in the hospital. It's so stressful, and it bloomin snowed. Sister in law and mum are taking turns to sit with him while I recover.

Radiotherapy planning booked for Tuesday, Enzo clinic Friday. Hoping he'll be able to get to them.

User

Posted 02 Feb 2019 at 19:42

So sorry , sending all my wishes and strength to both of you :-(( xx

User

Posted 02 Feb 2019 at 20:34

Oh no

i had a horrible feeling that radio silence wasn’t good news. I’m so sorry. And now a tummy bug on top, just what you didn't need. Hugs.

love Devonmaid xxxx

User

Posted 03 Feb 2019 at 00:18

Thanks guys,
I feel better this evening and will visit him tomorrow afternoon, it physically hurts inside that I cant/shouldn't go until I know I'm not sick anymore. My biggest fear is that we get stuck in the hospital and either don't get home or to the hospice. My mum reported back that they are flushing his catheter 4 times a day to prevent going back on continuous irrigation and that they came to take his blood again as his kidney function had reduced even more. But they didn't give her any numbers. This is really c**p 😭

User

Posted 03 Feb 2019 at 00:23

Oh no, Kentish. Didn't like reading your update this morning. Crappy enough that he is back in hospital, and why. But just so, so hard that you can't be there with him. Your lovely Mum and sister are worth their weight in gold though.

Wishing you a speedy recovery so that you can get in there, and for some improvement in N.

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

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