Making the most of it

My heart goes out to those struggling and also the families of others who are at peace now.

It has been and continues to be a struggle to cope with the lingering anxiety, any siren raises my heart rate and the fear sets in. I am taking steps to work on this and the awful merry-go-round of "what if's" that keep me awake at night. The children were not exposed to the trauma in the same way and although there are moments of deep sadness, they appear to be "just getting on with it", and I am relieved.

The Boy sketched his way through the exams, just about making it to the last one and fully expecting to have failed. He probably hasn't but it doesn't matter, his apprenticeship is not grade dependant (thank goodness). He has just returned from a week away in Majorca with his young lady and has had a wonderful time.

The Daughter organised a fundraiser through school for the Hospice and they raised nearly £5000, she's taken her end of year exams and passed everything with an acceptable grade, pretty impressive considering how much time she had off over the last 6 months.

Like I say, "just getting on with it".

I am just getting on with trying to put myself back together physically and mentally, emotionally will just run its own course.

Again, I am very grateful for the people on here who consistently offer their support, even if its only an acknowledgment that you are not alone. I sincerely wish you all the very best for the future, love and hugs to you all.xx

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 🍔

Instead of updating regularly, I started to keep a sort of diary. I stopped uploading as I was too depressed to properly acknowledge the love and support you all give, I think I’d begun to sound resentful and bitter. I don’t like to comment on new stage 4 posters as when they look at Nigel’s profile there is very little to offer hope and positivity and his membership of this special group has been fraught for some time. I have had a lot of support to help me get through the last few weeks and although I’m still sad I no longer feel in the depths of depression. What follows is the diary I have been keeping up until today.

After Boxing Day, Nigel became too fatigued to eat or get up to use the bathroom. He mostly just slept. He had a blood test on the 27th December which showed that his sodium had reached normal levels but his kidneys were failing. He was able to drink as he pleased but was too tired to make the most of it and by 30th December was taking very little fluid in. Nigel was sick twice on the 30th and the District nurses came out to him both times, the first time they gave him an anti-emetic and the second time they did observations and found his blood pressure to be something like 75/56, extremely low and an indicator of sepsis. The paramedics were called and it took nearly 2 hours to get Nigel downstairs and into the ambulance as his blood pressure kept falling every time they tried to move him, our stairs were too narrow for a stretcher so they had to get him into a chair to carry him down.

We got to A&E at around 4 on Monday morning and he was treated as if he had sepsis while they waited for blood results. He had a Ct scan and was given antibiotics and saline fluid. Nigel had a uti and this had developed into urosepsis. Monday afternoon I asked my mum and brother to bring our children to the hospital to see their dad. It was heart breaking but I’m glad I did as they had a long time to sit with him while he slept. Nigel had stage 3 aki and pancreatitis on top of the urosepsis.

I stayed at the hospital Monday night, he was given antibiotics and fluids in an attempt to reduce his temperature and rehydrate him. Tuesday he mostly slept and tried to sip fluids but struggled. Tuesday night he was very disturbed and slept very little. Wednesday his temperature and heart rate were better than previously but still not normal. Because of the holidays we hadn’t seen a consultant, Wednesday they came to say the ct showed pancreatitis and possible kidney obstruction and that it would be reviewed by the surgical and urology teams to see if there was anything that could be done to alleviate the suffering. They booked Nigel for an ultrasound of his pancreas and kidneys.

The Palliative care team came and went through what had been discussed and the possible outcomes, such as there being no further treatment and potentially being moved to the hospice.

While I went home to grab a couple of hours sleep the surgical team arrived to discuss stents and nephrostomy. Nigel hadn’t got a clue what they were talking about and my mum and sister in law did their best to take note of what has been said. It’s very frustrating that they came before the ultrasound has been done, this option may not have been given after review. Wednesday night was peaceful, I stayed at the hospital each night, they have brought me a mattress to sleep on in his room.

Thursday morning urology team came to discuss surgery, same consultant as when he had the turp. Agreed that the risks outweighed the benefits and to leave Nigel with the urinary catheter instead. Nigel was very sleepy but the most “with it” he’d been since the weekend. Medical team decided not to do the ultrasound as it wouldn’t make a difference to treatment. Palliative care nurse came back and confirmed our request to be moved to the hospice. Nigel was having iv fluid and antibiotics in hospital but there wouldn’t be iv at the hospice. All medications and antibiotics are to be given as a liquid or injectable as Nigel is having great difficulty in swallowing. He slept almost all of Thursday afternoon and evening.

Moved to the hospice Friday morning, Nigel showed an improvement overnight in hospital and started drinking again. Friday morning had a cup of tea and biscuits for breakfast then managed to brush his teeth and put his false ones in as well. This makes a big difference to how clear his speech is and his swallow reflex. Settled in well to the hospice and met his doctor and nurse, the aim is to alleviate as many symptoms as they can for Nigel, catheter leakage/bypassing, pain when opening his bowels, acid reflux pain when eating, thrush in his mouth from the antibiotics and the slight delirium that has appeared. It was clear by lunchtime that the initial buoyancy of the day (probably steroid induced) was waning and that Nigel was exhausted.

We can almost see our house from the hospice it’s that close, I feel fortunate that we have this facility so close and that there was a bed available when we needed it. I have to say the respect and compassion shown on the hospital ward was amazing too, they really cared for him and me and our family and friends.

Saturday 5th January Nigel couldn’t eat or drink and mostly just slept. He was given sedation a couple of times and his anxiety coincided with the need to open his bowels, he wanted to get off the bed to go to the toilet. I held his hand when I could and he managed a hello to both children. They were sad but like me, don’t want to see Nigel in any more pain and are glad he as sedated. Lots of family through the doors and some beautiful friends came home with me to help take the Christmas decorations down. I cleared out our bathrooms which are full of catheter and incontinence necessities and I moved the medical stuff out of our bedroom. I couldn’t bear to keep looking at it all knowing he wasn’t coming home. I can take it to the hospice and they will use it for Nigel there.

Letter in the post from onco suggesting a ct scan is necessary and that the recent issues may be due to fluid restriction. I felt a wave of anger and hatred when I opened it, too little too late. I emailed onco over 4 weeks ago to get some updates and ask for a scan. It turns out the Secretary was off sick, no one dealt with the emails and I was too busy looking after us all to keep chasing, sometimes the energy can’t be directed into following up phone calls and emails. There’s no way Nigel is going to make this month’s clinic let alone go for a scan. But 4 weeks ago it may have helped predict what was going to happen, who knows.

Sunday 6th January

Nigel was buoyant in the morning and although sometimes difficult to follow, chatted to visitors and had plenty to drink. By lunchtime this had worn off and he began to experience all over body pain, he hadn’t taken the Abiraterone since last Friday so perhaps that had an effect on the bone metastases. The nurses gave him liquid oxycodone, no oramorph as this affects the kidneys. He settled for several hours and woke up early evening to chat with me before I left for home. He started to asking to come home, although this was not his plan, and I think it will be very hard on the children to see him like that all the time, if he insists I said I would arrange for his end of life care to be moved to the home.

Monday 7th January

There are ups and downs every day, the mornings are probably the best part of the day, Nigel was chatty and relatively alert, the kids came for breakfast and told him about their day ahead or what they did the evening before., they showed him pictures of things they’d like for their 16th and 18th birthdays this year and after they’d left for school he asked me to buy them now and put them away. Nigel managed to drink lots of lemonade and diet coke and was well hydrated but still struggling to eat The doctor thought he may have a very bad case of thrush in his gullet and gave him treatment for it. Long periods of sleep interspersed with chatty good humour. A good day for the kids to see him. The nurse prepared a Compact Coffee flavour Ensure for him, a scoop of ice cream, some milk, some crushed ice and blended. A very nice frappe which he managed to drink.

Tuesday 8th January

Nigel slept well but struggled to wake up, only really becoming alert around lunch time, Doctor felt a change from Haliperidol (anti-nausea ) to metoclopromide might help with the drowsiness, so changed to this in the evening. A quiet day, I gave Nigel as shave and helped give him a wash, he talked to the Doctor about maybe getting out of bed on Wednesday and into his wheelchair. Very poor appetite but managing a chocolate milkshake and another frappe. I rang motability to inquire as to whether we can purchase the car mid-lease, we can. I have to notify the DWP that Nigel is in a hospice as if he is admitted for 28 days the PIP stops and this is what funds the car. These are the shitti est things to deal with when this situation arises. Good urine output, nurse feels that kidney function may have improved/recovered.

Wednesday 9th January

A fairly rubbish start to the day, Nigel woke up at 7 and bypassed his catheter, by the time the nurses had changed him and his bed he was exhausted and went back to sleep until 11am. Then family visited with a 1 year old and he woke right up, he then had a stream of visitors until 5pm, he was really with it and chatty. The kids came up and they decided they would come for longer on Friday. Nigel is still drinking but can’t eat, he finds food attractive but once it’s in his mouth he doesn’t like it and spits it out. I have asked the doctor if there is any tweaking to be done with the meds to improve this. They will discuss for tomorrow. A nice day for everyone. Social worker dropped by to talk to me and a different one to talk to daughter. Son has had a meeting with his but neither child.inclined to talk at the moment. Nigel is scared, I asked if a social worker could drop by to talk to him and help him share these anxieties as he wants to but stops himself because he’s upset and doesn’t want me to be upset.

Thursday 10th January

Same scenario, Nigel was awake early and with it for an hour before he went back to sleep and could not bring himself around to chat. Visitors arrived around 11.30 and he woke and chatted for a long time. Drinking ok but no appetite, Nigel started asking about coming home. He said to the visitors that he was going to build himself up and come home in the next few weeks. I didn’t know what to say, I wasn’t sure if he was trying to convince himself or if he was convinced he will recover some of his health from this episode. If I’m totally honest, I was afraid to have him home as his needs are more than I could manage on my own and that would mean relying on nurses to come to the home, they wouldn’t be there all the time and it’s sods law that you need them when they aren’t readily available. He seemed fitter than when we arrived at the hospice, he had enough strength to turn himself over in bed and to pull himself up the bed with the hoist. He hadn’t been able to do this at all until now. I went home for a shower and open the post. My mum sat with him but he slept. A relatively alert afternoon and evening, no food but drinking ok. Catheter pain, an ache that goes away with the Instillagel so probably down to it being a size 16 rather than anything else. Went to sleep talking about how tomorrow he was going to get out of bed and into the chair (very comfy recliner, I’m sleeping on it at night.) Positive thinking. He said he was going to ask the doctors what happens next, I don’t think he understands that he is still deteriorating, they’ve made him feel better but not being able to eat anything is not a good sign.

Friday 11th January

Nigel is a very determined man, he decided at 9am he was going to get in the chair and he did, with the assistance of 2 nurses. The kids brought Macdonalds breakfast at 10am and I made Nigel a sausage sandwich, he ate half a sausage and drank 2 cups of coffee. We were all a bit surprised at this. He sat in the chair for an hour and then went back to bed. He managed to try the fish and chip lunch they provided, a couple of mouthfuls. He chatted with visitors in the afternoon and then ate the middle bit of a portion of arctic roll for his tea. He had another coffee and went to sleep around 9pm. I don’t know if this is just a little hiatus or if there is an improvement in his kidney function and general well being. Nigel said he might ask them to check next week. He has been telling visitors that he should be home in a few weeks and is intent on getting into the wheelchair tomorrow for a tour of the hospice.

Saturday 12th January

A long night in which Nigel had trouble with his bowels opening without control, twice in the night, then on waking. He managed to get up and into the chair for half an hour, then he went back to bed for a while. Then his bowels opened again, after the nurse had changed him he asked to get in the wheelchair, I took him on a little tour of the hospice. We went to the kitchen and made a coffee, I can’t quite believe the improvement and neither could the doctor when she saw him being wheeled back to bed. They are going to review him on Monday as he seems to be improving rather than deteriorating. Appetite is still a major issue but drinking plenty. I am prepared for this not lasting but it feels good to have some happier memories.

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

No beds at the hospice today, maybe tomorrow or Wednesday. Otherwise he wants to come home and go into the hospice from home for a while. He doesn't want to stay in hospital any more which is a positive frame of mind to be in.

Very frail, kids came in and were a bit shocked but regaled us with tales of crashes and awesomeness on the slopes, very entertaining and more stories to come tomorrow when they visit again.xx

N has improved a little, no more chronic nausea and the tiredness has abated enough for him not to fall asleep mid sentence. Another blood test today to see if that is an improvement in the sodium or just him adjusting to the new low level, results tomorrow. A quiet day yesterday with the kids visiting and enjoying a game of cards together and today N and I have watched a 30 min programme on his kindle, the first time we’ve watched tv since January. These really are “making the most of it” moments, the kids are ok, as well as can be expected, finding it hard to focus but managing the necessities. I try to keep a consistency with expectations but everything is negotiable, Son came in his lunch hour today but daughter may not see N until Wednesday so I’m thinking maybe an early morning coffee with him tomorrow for 5 minutes and then a longer stay on Wednesday, or going to collect her from school early if he’s having a good day and squeezing in a visit then. After Friday’s horrible deterioration I think they need to see him as often as possible but this is really hard to balance with school.

“Discombobulated” love it, I think that is an apt description. I’m going with your “badly expressed concern” and trying to convince myself of this every time someone asks if I’m ok, which is often. Perhaps my resting face has taken on a permanently miserable/worried look, it’s exhausting keeping up N’s spirits, and the children’s and the visitors….

I do feel like I have lost the connection I had and I didn’t previously give a second thought really to how I was perceived by others at the hospice but your right, I am questioning everything that I took for granted before, staying late, going early, sleeping over, making food, coffees, washing, shaving, cleaning. I spoke to my mum and sister in law today about it and they both thought it was probably concern but agreed that it was a funny way to express it, they also suggested that maybe it was the staff who felt that I was somehow saying that they weren’t doing it right. I suppose that’s a possibility but not likely. Anyway, as long as N is happy there and he is, then it doesn’t really matter, I’ll just get on with it and think more carefully before I do stuff.

Wishing everyone a quiet night.xx

Kentish

That is an horrible situation to be in. As regards the anti spasm medication they can take couple of weeks to be effective, I have tried most of them and found one called Regurin to be the most effective,but give the vesicare a chance to work. I suffered with passing lots of debris and clots from the bladder but nothing like you describe your husband's situation. Bit of a catch 22 ,a bigger diameter catheter may not get blocked so quickly but it can be more painful and make the penis ache. I have a permanent SPC so size is not so much of an issue. I still pass debris, the blood clots did take a few weeks to subside. I have flushing bottles and at the first sign of a blockage I flush my catheter, fortunately they are quite rare and I am not sure they would help in your situation. 

Hope you both get some respite from the situation soon.

Thanks Chris

ColwickChris,  he only bypasses when the catheter has blocked. All the clots have come down the catheter rather than around it. He has Instillagel if he wants it but as long as it's not blocked he's not in any pain.

I found this article :

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4016967/#__ffn_sectitle

Regarding palliative treatment for gross haematuria,  I'm hoping that one of these treatments  will reduce his symptoms to a management level for him to come home. 

I need to ask today what happens if it's not successful, where does he go?

I don't know if he moves from the urology ward to a permanent ward, do they even exist anymore!

Lynn,

Exactly, I have a plan to have one home contact, one work contact and one general contact. These lovely people then relay any info to everybody else.

I'm just off to the hospital for morning rounds at 8am.xx.  fingers crossed for a cystoscopy and some relief today.xx

...and we're home. 

Oh peed freely and opened bowels. Sodium down to 124 and it's noticeable in his lethargy and sleepiness. Really lost his appetite now so not eating salty things to help. 

Discharged because other than stay on restricted fluids there isn't anything else urology plan to do, Oncology are supposed to be dealing with the low sodium.

Urologist said they sent the tissue off for histology, to see if it was prostate cancer, prostate tissue or something else. He said it was obstructing the bladder and in the bladder. Let's hope for something really boring like prostate tissue. .....

Oh to have bloods done again this week to check sodium, concerted effort to entice him with the saltiest foods now to improve it back up to the 130 range. 

Oh cried when we left, he thought he was never coming out. ..I have to say I felt a bit like that this morning as I watched him sleeping with all the noise around us.

Xx

Here’s hoping the increased fluid intake will improve things.

Read this poem (half way down the page, dated 29th November) from Julie -
https://community.prostatecanceruk.org/posts/t9751-Advanced-prostat-cancer-part-2/page2

Julie had the comfort blanket for a long time but was always generous in sharing it with others.

Anything normal is going to be a huge effort at the minute; it is a great shame that the moderators block any swear words on this forum because sometimes, a good expletive helps. I used to go out for a run and scream once I got round the corner.

£565 for a king-size Hypnos mattress only. Mine with the new map of Tasmania on it might need replacing, but I could always turn it round to Her Loveliness’s side and blame her.

Or turn it upside down and pretend nothing ever happened!

Cheers, John

Edited by member 27 Nov 2018 at 14:12  | Reason: Not specified

Christmas and the mattress both sound lovely. An advert flashed up on my FB account today or the John Lewis top-of-the-range mattress which is priced at a smooth £18,000 !

Sorry Kentish, we went off to Gambia for some much needed sun. I am so sorry that I didn't respond to your posts and also that none of the other regulars responded to give you any kind of hugs like Vick did. It may be it's just because no-one has really had quite the challenges & problems that you are facing but that shouldn't stop us all from giving you a bit of emotional support - Franci is right that you are a star.

Now though, I don't really know what to say to you - not sure I could ever be okay with someone who makes Marmite flavoured stuff for pleasure :-/ 

Edited by member 23 Dec 2018 at 23:25  | Reason: Not specified

You and Devonmaid can have half the comfort blanket each.

Hi Kentish, as Lyn says not an easy read but it is a very clear, loving, detailed diary.

I have been with friends in hospice care and relate so much to how you describe what is happening. 

Sending you, Nigel and the children hugs and much love.

Ian

I also don't post much, but I did want to send hugs from across the world. We are not at your stage (yet), but we are in the realm of no more treatment, PSA rising, pelvic fractures and pain and reduced mobility. I am one of those people who is better having an awareness of things in advance so I do get comfort from reading the stories of how others cope with all of this.

I do so admire your spirit, and I understand a little of how frustrating it is trying to navigate these systems, find out information and get action to make our husbands as comfortable as possible. And all the while try to keep putting one foot in front of the other. I'm a quilter, so by the magic of the internet the comfort blanket has been halved, some extra added, and is hopefully now residing with you and Devonmaid.

Love to you, your husband, and your children.

Yes Chris, having youngish children certainly puts  a different perspective on life and cancer, it feels so wrong that they are losing their dad already and that they'll not have him there for all those "important" milestones. It has certainly lent a frantic feeling to approaching each treatment, really desperately hoping that this one will last. I hope we've disguised the desperation from the children and instead given off an air of "living life" regardless of pca. I admire your attitude and determination and I understand your reluctance to embark on what can sometimes seem a futile journey. I have everything crossed for you that each and every treatment will knock your pca back as it should. Big hugs and love to your family. Xx

Ha Lynn! Those pesky bins, my mum has been getting the Boy to empty them and then carry them down to her house (just along the road) and then she puts them out with hers in the morning!

Whatever works eh?

I was just going to post a midday update as we've had a family meeting. Bloods have been taken and the consensus is that if he is medically stable, i. e sodium etc are not in the danger zones, then we are planning his return home! I can barely contain my excitement....I know he's still really poorly but it's like we've had a reprieve and that perhaps now it may be a more steady slope than the Base jumping we've been doing.

Occupational therapists have been making  lists for me of measurements required and are going to try and get his legs moving again.

We talked about if he is not stable and agreed that the hospice is a good place to stay and we will just carry on as we are. I have popped home for an hour to do the washing and read the post etc.

Our hospice is 75% NHS and 25%charitable donations. According to their website they need to raise 600000 a year to sustain it. The staff are all for family pitching in to help with washing and personal care, and I can go and make a cup of tea/cofree etc when I like and bring it around to him. There is also a microwave and toaster and fridge, which makes it easy to take our own food in and reheat.

But today he has eaten my porridge, 2 biscuits and their sausage and mash followed  by ginger cake and custard. Plus 3 cups of coffee.  His appetite, taste buds and sense of smell appear to be returning, a bit of me hopes that if they restart the Abiraterone it doesn't mean they disappear again. 

He's having a nap now and the kids are coming up for dinner, I think we're back to "making the most of it"

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

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

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

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!

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

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

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

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

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.  

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

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 

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.

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

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.

I think we are all very proud of you.

Thanks Chris

Edited by member 20 Feb 2019 at 23:41  | Reason: Not specified

Sorry to hear your oh's are struggling too. You can both share the seesaw with me if you like, let's see if we can get it to stop crashing up and down and instead gently rock!!

Sending big hugs your way, I hope for all of us, today is better than yesterday.xxxx

Although N is feeling marginally better in himself the reality is pretty awful. Ct scan showed extensive liver and lung secondaries, so bad the onco didn't feel Enzo would be very effective but is happy for N to try in the hope it may improve N enough to try Cabazitaxel.
He was straight up with N that his liver is coping but is so badly diseased it may fail at any time and there will only be weeks left at that point.
Onco will circumvent "new patient " clinic and prescribe the Enzo. N understandably knocked for 6, we didn't expect anything other than bad news given his current state but it's still hard to swallow.
He doesn't want to come home now if there isn't a bed at the hospice, I get that he feels precarious and stress is not helpful in feeling any better.
Back to one foot in front of the other :(

Edited by member 01 Mar 2019 at 12:45  | Reason: Not specified

Thank you @ Deblc

Thank you @Merrivale, I think “struggle” is a good description, nothing about this has ever been easy has it!. It’s so easy to get caught up in frantically trying to make things better that its easy to lose sight of the actual living bit. N and I played Rummy (card game) today, for the first time in a long time it felt like we were doing something other than thinking about this disease and its effects. I’m trying to keep myself healthy in both mind and body but I’ve just got over a rotten head cold and the tears keep falling, I don’t know about strong, I think I’m just dogged.

Thank you @ Mrs & Mr L, I don’t think there are any words, just thoughts, and cyber hugs and knowing that I’m not alone even if your paths are not the same as mine. Everyone has experienced grief at some point and can identify with how we are feeling. I appreciate your words, I often don’t know what to write on other posts either.xx

Thank you @Devonmaid, Glad to hear you got away, sorry to hear John wasn’t able to come on any walks, its really tough when they are left out/behind. I don’t know how you feel but I feel really guilty about doing anything “nice” that N couldn’t join in. That’s awful that your appointment was cancelled, I hope your new appointment is soon. Waiting and wondering is exhausting as is the effort of trying not to wonder!
This mornings urologist said he had spoken to the onco and asked if we had too, N said “yes, its not good” and the urologist agreed and said that it would be better to stay in hospital until there is a bed at the hospice rather than going home on Monday if there were still no beds available. After he left, N said to me “You know if I go to the hospice this time I might not be coming out” It’s so sad to hear him acknowledge this out loud but I’m glad I don’t have to pretend otherwise. In his usual way once this was said he moved on to a different subject and when asked by others how it was going, told them he was going to start a new drug and hopefully build himself up for the chemo. Whether this happens or not is irrelevant, his intentions are what’s important.

Thank you @ Chris J, I am only ever scared of the unknown, being told about the scan and the likely symptoms N will experience is truly awful but not frightening. I just want to know how his symptoms can be managed as they arise to relieve him of pain and discomfort. This doesn’t always mean being off his **** on OXYNorm!! Although he does seem to quite like it 😉.

Sending you all big hugs and best wishes for you own situations.
xxKatie

Edited by moderator 02 Mar 2019 at 21:21  | Reason: Not specified

Dear Kentish,

Sending love and hugs to you all. Heartbreaking for you,

Vicky xx

Kentish, Hope the past day or two has been OK.  So hard to hear N acknowledge what is happening.  But yes, both recognising it does help somewhat.  Bless him for always looking forward to the next possibility too.  Like you, I am best when I have some idea of what is to come. But it does still frighten me.  As you say, managing the symptoms and comfort are the aim.  At our place we are doing that, but the result is one sleeping beauty a lot of the time.

Devonmaid - I loved hearing of your weekend away.  So good for you both to have that time with the family.  We have very fond memories of time spent near the Forest of Dean - have stayed a couple of times at Symonds Yat.  But yes, it is very hard when you can't both enjoy walks.  And hard to enjoy something you once would have done together. My profile is a very brief sketch, I'm afraid.  But it gives you a general idea.

Love to you both.

Dear Kentish,

Sending the biggest hug ever,

love from Vicky xx

Devonmaid, you aren't rambling at all.  You are always so understanding and insightful.  And thank you for sharing some of those stories.  I thought seriously about whether to post my message yesterday, but as you say we've always tried to be real here.

I'm happy (boy is that an understatement) to report that today is a better day.  While he is in hospital he is actually on an oncology/palliative ward, under the care of palliative specialists.  They've changed/ increased the sedative, so I came in this morning to hugs and tears.  We feel something is likely going on in his brain, but whether it is meds, mets, or whatever else who knows.  His emotions are all over the place, and he has been holding his head a lot.  But at least he is comfortable, well cared for and not too far from home.  And thank god I've been able to hold his hand and tell him I love him. And like your sister forgetting may be difficult.

Love to you all.

Edited by member 14 Mar 2019 at 01:21  | Reason: Not specified

Thank you Devonmaid, you do understand, I know.  And you do convey it. Calm on the outside, but even that is a very very thin veneer now.  Had to warn those outside the tight immediate inner circle yesterday, so a tough day.

I've been in here for a while this morning.  Still peaceful, and I'm running Jerusalem, Land of Hope and Glory and now some welsh hymns through our little speaker.  So all is as good as it can be in these terrible times.

Kentish - love to you.  I hope today has been OK.

Edited by member 17 Mar 2019 at 23:59  | Reason: Not specified

That's fabulous news DM,  I'm so glad for you and John. Long may it last.xxx

N is looking at the "horse pills" with a suspicious eye. He did ask if he swallowed them or if they went up the b*m they're so big!

Sodium only up to 118, another radiotherapy session cancelled but N happy enough between naps. Can't ask for more than that at the moment. X

What wonderful news, Devonmaid.  Gladdened my heart.  To have that time when he is feeling better, and then to have the results confirming  is wonderful.

And Kentish, happy enough between naps is indeed a good thing.  Long may it continue.

We are still here and amazed we are.  But family have managed to fly in in time now.  I think this extra time has been a gift, really, and allowed me some breathing space.  

Love to you all.

So sorry to hear this Teacups. Thinking of you.

You're right Lynn, I'll ask for recommendations and start there, I just feel so anxious I can't think straight. Got to get a grip.

I am glad we managed to have these few days at home which were nice and we managed to spend some time together as a family. Xx

Hi Kentish

i don’t know if you will read this but I wanted you to know that I think about you and Teacups every single day. I was hoping you would let us know how things are going for you and the children. It’s so gratifying to hear that they have done their best in the most appalling situation, their strength is simply amazing.  Your own strength became legendary here and I hope you can remember that. The trauma you have been through (and it surely was) was awful to witness even from afar, but I’m hoping that we here have been a little help, just by being a listening ear. I know that I need that now as John and I travel towards that place. 

My heartfelt best wishes go with you and my hopes that you and the children will recover, with time, from the events of this terrible time in your lives.

with love and hope for the future

Devonmaid (Allison) xxxx