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Making the most of it

User
Posted 05 Dec 2018 at 23:43

 how much!

I'd want the thing to put me to bed, massage me and turn off the light for that kind of money

Oh has definitely got a tiger. I want to know as much as possible for our son's benefit, and oh's 7 brothers and their sons etc.  How do we go about the genetic testing I've read about? Oh's mum died of breast cancer before she was 50 and oh's dad died of prostate cancer in his late 60's. I'm not sure what to ask or who?

User
Posted 06 Dec 2018 at 00:56
I think I would want a bit more than that 🤭
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 06 Dec 2018 at 01:11
I am currently on a genetic testing programme via the Royal Marsden Hospital for PCa, but I don’t think I will be of much help to them as there is no family history of PCa as far as I know and I have no siblings - you all knew I am an only child, didn’t you?

It involves a lengthy familial questionnaire and saliva sample for DNA testing.

Cheers, John.

User
Posted 06 Dec 2018 at 09:22

Thanks John, did you initiate that or your oncologist? 

Lynn, hahaha

User
Posted 06 Dec 2018 at 09:49
I went to see the No. 1 specialist prostate oncologist at the Royal Marsden Hospital (although I am ‘cured’) on the NHS to discuss further steps should I suffer biochemical recurrence.

He nominated me for the genetic survey, which of course, I am more than happy to participate in.

Someone from somewhere else is phoning me tomorrow about PCa, can’t remember if it’s a survey from the Royal Surrey County Hospital where I had surgery or from PCUK. I have suddenly become very popular!

Cheers, John

User
Posted 06 Dec 2018 at 09:52

Thanks John, I shall find the contact details for No. 1 and ask. 😊

User
Posted 06 Dec 2018 at 16:32
Your OH can ask your GP for a referral for genetic counselling. They will take a full medical history for him and any known history for relatives, and they will also ask about the areas where he and his family lived and worked, what the wage earners did for a living, etc. They will probably also spell out in detail the pros and cons of going ahead with the test and then send him away to think about it.

We have a brain tumour in the family so I was referred for genetic counselling. By the time we had done two appointments, they had completely convinced me that genetic testing was a bad idea. Apart from anything else, there might have been unintended consequences for my children, such as not being able to get a mortgage when they grew up, not being able to get affordable life insurance, and the emotional impact for them if we found out that I had it. Direct impact for me included possibly not being able to move house in the future unless I could buy without a mortgage. They also explained that it was much more likely to be environmental - my wider family almost all lived in the same few streets, drank the same water, cooked similar food in similar ways (most significant, the use of the same chip pan for many years and not necessarily changing the chip fat very often), breathed the same air from the same pits and shipyards.

It is similar for prostate cancer. Only a small percentage are thought to be truly hereditary (5%), most commonly BRCA 2 at less than 1% of all prostate cancers. If a family carries BRCA then it would usually be seen as breast cancers in 30 year olds, metastatic prostate cancer under the age of 50, ovarian cancer, male breast cancer, pancreatic cancer and cases of childhood leukemia. There are other gene faults such as HOX which are more common than BRCA but have no relationship with breast or other cancers apart from prostate.

Vast majority of prostate cancers are thought to be environmental - drinking water with added chemicals, consuming foods that have had hormones added, plastics in our diet (cling film, drinking out of old plastic bottles that have been left in sunlight, that kind of thing), consuming a lot of processed food. And that makes sense in my head, at least; traditionally, a mother would cook for her sons the same food that she cooked for her husband, in the same pans and possibly that would be the same food that her mother-in-law had cooked before her. When I asked our uro about the risk to our son, he said the best thing we could do was change his diet - get him into a prostate friendly way of living while he is still young. He also said that if society could change the way small children eat now, prostate cancer could almost be eradicated in one generation.

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

User
Posted 06 Dec 2018 at 17:58

Wow Lynn, thank you.  I think the most convincing thing there to not have it done is the future financial impact. Neither oh or I could afford critical illness policies because of our parent's cancers so we opted for terminal illness cover/death. We didn't have any trouble getting a mortgage though!

I worry that oh may carry the BRCA gene and dear Daughter is at risk also. Oh's recollection of his mother is that she possibly had breast cancer earlier and was in remission for some time. He was young and doesn't remember accurately. I can encourage her to check herself regularly and to visit gp at any sign something might be wrong, the same with Son. Raising their awareness to look after themselves well and to be insistent if there's something wrong. I don't want them to turn into hypochondriacs though!

I had thought about the impact emotionally on son of knowing the liklihood of developing Pca, and I didn't know a lot of pca is down to environment. We eat very differently from how oh was brought up and have always veered on the low dairy/red meat side. Lots of vegetables in our house. It is a battle to keep the little bu**er out of the Golden Arches though. I have been drip feeding the dietary information to Son for a couple of months but I don't want to come across as a nag, teenagers dig their heels in don't they?

Although we're estranged from the 7 brothers, oh did contact one on diagnosis to pass the info on to the others to go and get themselves checked out. He said he'd feel guilty if he didn't.  I get that.

I emailed the RM earlier to inquire, if they just add his genetic profile to a database it will help somebody somewhere down the line, probably. We don't have to pursue it from this end and get the kids tested. I know what it feels like to worry about whether you have cancer, my father's onco said both my brother and I were likely to develop lung cancer as we had smoked, my father and 4 of his brothers have died from lung cancer, one at 31, the rest in their early 50's. I spent a lot of time worrying in the first few years after his death, now it crosses my mind occasionally and I think; I've done my best to reduce the risk there isn't anything else I can do other than look after myself.

I'm glad you posted that Lynn, it's easy to get wrapped up in something as a distraction from what's happening, I think it's called "going down a rabbit hole" isn't it.

Xx

User
Posted 10 Dec 2018 at 23:02

7/10/18: Sodium 128, Hb 98.

Oh is pleased the sodium is on the rise and is going to try the desmopressin again tomorrow. Fingers crossed this was not why he was sick a couple of weeks ago and that it will be effective in maintaining his sodium levels.

Hb down a little but not as awful as it could be.

We went a nephews 5th birthday lunch and later in the evening to a party/disco on Saturday. Oh managed 2 hours at the lunch and 3 hours out in the evening! 

He's staying up for longer stretches and is managing pain with paracetamol. He's totally fed up with the pooing pain but says today it was a 9 rather than a 10.

Some family visited tonight and we had take away Chinese,  which oh tucked into with enthusiasm,  that should improve the  sodium by at least two points!

Tomorrow he plans to visit work (I'm driving ) and distribute gifts to his managers to say thank you for how supportive they have been.

And we wrapped some presents and wrote some cards. In the grand scheme of things, not a lot but to us, these are massive improvements/achievements. 

Katie xx

 

User
Posted 11 Dec 2018 at 00:01
Fantastic news xxx
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 11 Dec 2018 at 00:11
I missed your previous post somehow, sorry. I get the ‘don’t scare the kids’ thing but I had pre-cancerous cervical cells at 18 and had to have some of my cervix removed so was obviously really anxious for my girls and banged on and on about them being checked as soon as they were old enough. My mum’s cervical cancer was spotted as a result of my diagnosis. Even with the family history, they could not get cervical smears until they were 24 - it was ridiculous. Two were clear, one has close monitoring now. I had part of a breast removed in my 30s but there is no breast cancer in the family, just the brain tumour which pops up all over the genogram.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 11 Dec 2018 at 00:36
Lynn, I had a reply from RM which was to "ask gp for a referral "😄 so back to the start.

I will definitely be more explicit about the risks of cancer with the kids but I feel that now is not the right time, it's already scary and sad in our house and I don't think I ought to add to that just now.

I have always banged on about the smoking and the risks ever since I thought they would understand and possibly want to try it (I started when I was 11) and I hope they never do.

I openly discuss smear tests etc indoors, much to their embarrassment 😂 but son should be aware as he has a girlfriend and daughter needs to be prepared if she has sex at a young age (15 at the moment but such a baby still) There isn't a Jade Goody for their generation to keep it in the media.

It's hard to get the balance right of "cloud of doom" hanging over them and "understanding the risks and acting accordingly" I'll need to think it through and pick a suitable opening, or make one. There's never a good time but some are better than others.

X

User
Posted 11 Dec 2018 at 07:37
I couldn't agree more.

The HPV immunisation programme should make a massive difference to that generation, and young society generally has a good grasp on implications of smoking, substance misuse, etc. What I think we need is more rapid progress on healthy eating as a cancer prevention tool ... Jamie Oliver and his like have begun a sea change in school dinners & health curriculum but a general principle of less processed foods and more fresh ingredients, benefits of mediterranean diet, etc can be done without being scary.

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

User
Posted 16 Dec 2018 at 12:38
The days I don't update tend to be the good ones, I don't like to tempt fate by revelling in oh's chipperness (not sure that's a word) or when we do something celebratory.

So I found it quite difficult to actually post the comments about going out at the weekend and the things to look forward to during the week.

I'm sure many others write and delete posts all the time because it's just too hard. We made it to his workplace but it was only half an hour before he'd had enough and then the week went downhill from there really.

We've just got back from an overnighter in A&E due to the low sodium and a possible urine infection, again.

6th December Sodium 128 yay

12th December Sodium 122 rats

15th December Sodium 112 omfg!

Today it's back up a couple of points to 114 and he has been discharged.

We'll go back to an Ambulatory Clinic in the morning to see if it's improved further or not.

The drop coincides with trying the desmopressin again so advice is not to bother with drugs for the SIADH but to continue with fluid restriction indefinitely 😕 poor oh, today he's only allowed a litre, yep 1ltr.

We ended up in a&e because his blood test results marked urgent on Friday were not back on Friday and when they did come through, weren't "viable". Doctor on call came out to review oh and decided an ambulance was required.

Other than changing his omeprozole (which can reduce sodium, well prescribed there urology!) for an antacid that doesn't; there wasn't any benefit to last night.

Fed up, tired and very, very grumpy :(

User
Posted 17 Dec 2018 at 09:10
Hope you get a decent Xmas Kentish you are a star..
User
Posted 17 Dec 2018 at 19:01
Ffs, I'm either going to punch someone or lay on the floor and wail.

9.30 Entered Ambulatory Clinic (basically means a walk in clinic, no fixed appointments )

10.30 Blood taken

4.00pm seen by Doctor and consultant to discuss results.

The blood sample results were delayed (no reason given) and when I eventually cried and said how cruel it was to keep someone in a chair for 6 hours when he spends around 15 hours laying down usually a nurse tried harder to get the doctor to come (ringing and paging them)

If we'd known it was going to be all day we could have been prepared, gel cushion, pillows, blanket, nibbles etc.

I always have biscuits and crisps and water but he was so uncomfortable in the chair 😠.

Outcome of today: Sodium still dangerously low and needs close monitoring. Oh has to stay on 1ltr fluid restriction and has been prescribed demeclocycline to try.

Got to go back to the clinic on Wednesday for monitoring, Acute Oncology review and Endocrine team review. I asked a nurse what would be the best time to come back on Wednesday and she was so bloody awkward !

Ending our conversation on "I don't want to promise anything, you could be here all day, there's no good time where you'll be seen quicker."

I replied with "I just wanted to know if there was a better time than others to bring in a terminal patient who spends most of the day in bed." And then I cried, again. Nurse was duly embarrassed and apologetic and tried to find out from the doctor if there was any other way we could have the reviews, there isn't.

Bloody minded staff is the last thing I needed today, if you can be nice after you've upset someone then you could have been nice in the first place.

On the upside: Abiraterone dispensed for another 4 weeks so there must still be some benefit.

Psa has been around the mid 30's for the last few weeks. Don't know the rest of the numbers and can't be bothered justifying to nurses/doctors why I want to know. I'm sure for lots of people , carers or patients, just knowing the numbers is a comfort, it doesn't really matter if they are worse.

Need to call urology tomorrow as oh is only dribbling pee and he's bleeding a lot when he goes, may need a bladder flush and a catheter again.

Love him, he's still choosing to be treated and says things like "once we've got on top of this it'll be a bit better."

OK, calmed down now...thank you for listening xx

User
Posted 19 Dec 2018 at 20:46
Spoke to urology nurse yesterday to ask how oh goes about having a catheter put back in and the pros and cons of this. Good conversation where oh's "comfort" was the prime objective. Booked in for today's clinic to have a catheter fitted and take it from there.

Back to Ambulatory Clinic this morning:

Sodium 120 whoop whoop

Creatinine etc all within normal range so that was good.

Doctor was good at explaining and listening and rang the Endocrine consultant and put him on speakerphone for us all to listen to the questions and answers. Requested oh to do a 9 am cortisol blood test tomorrow morning. I gather this is to narrow down the reasons for the hyponatremia /siadh further.

Oh to stay on 1.2ltr fluid restriction and the demeclocycline. To be reviewed next week and then monitored by gp.

A little ray of sunshine🌈

Urology clinic: size 16 catheter placed by nurse. Oh coped admirably considering how much pain he has in his penis. A 5ml top up of morphine before hand was a good idea!

Immediate relief from the stress of having to urinate through a very sore urethra, very concentrated urine that stung so bad.

A couple of bladder spasms, I have requested gp to look at the looooong list of medications and check whether he can go back on the solifenacin to help with this.

Oh feeling positive about today's outcomes, I am absolutely exhausted and going to bed now.

I've had a little Google about the cortisol query but until he has his results as to whether it is elevated, we won't know the relevance.

Xx

User
Posted 20 Dec 2018 at 01:54

Hi,

just want to send you a hug. I think you’re bloody marvellous : ) xx  

Broken crayons still colour ❣️

User
Posted 20 Dec 2018 at 13:19

Thank you for the hug Vicky, 

Up early for blood test this morning and results should be back with gp tomorrow  (one can live in hope!)

Good night with the catheter,  some spasms but the nurse taught him some breathing techniques,  one to help the spasm pass and one to help with the urge to urinate. Just waiting for gp to confirm whether to start Solifenacin again.

There's a cafe at the clinic, we stayed and had breakfast after blood test, egg and beans on toast for him, sausage sandwich for me. It was lovely to be out of the hospital and house, for both of us.

He's been asleep for the last 2 hours, kids are buzzing round (finished school yesterday) and I'm getting on with the marmite whirls and cheese straws for boxing day. Sun is shining. :)

How are you guys getting on? Xxx

User
Posted 23 Dec 2018 at 23:23

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

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

User
Posted 23 Dec 2018 at 23:24
Vick, I love your 'broken crayon' analogy.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 24 Dec 2018 at 07:09
So sorry Kentish but selfishly been wrapped up in my own pre Xmas results and having to wait till the New Year to see what treatment plan is. You’ve been through so much and I admire you both immensely. I’ve missed a lot of posts recently as it can take over your life tbh and keep you depressed which is not good for ones soul. Hope Xmas goes as well as can be

If life gives you lemons , then make lemonade

User
Posted 24 Dec 2018 at 15:32

As others have said Kentish you are a star and you are trying to make sure hubby is as comfortable as possible plus getting the right treatment.

A virtual hug from me to you both. Sorry i didn’t reply earlier. I must confess i only visit this section from time to time.

Ian

User
Posted 25 Dec 2018 at 00:25

Thank you for your replies. I'll be honest and say that this is a very lonely place sometimes, I check in most days but feel I have nothing to contribute other than sadness. As each new poster comes on looking for hope, I think it best to keep our story to ourselves, there's nothing inspiring or optimistic for me to say.

I wish you all a peaceful Christmas and positive 2019

User
Posted 25 Dec 2018 at 08:48

Hi Kentish 

I don't have much to say these days as my journey just continues and I can't be of much help to anyone really. I have followed your journey and may I say that you come across as a remarkable person who is giving her all to help her oh through a terrible experience. You tell things as they are and explain what, how and why various treatments are being used which has to be invaluable to others who may be reading without comment. This site is such a helpful resource thanks to people like you who share information truthfully as some experiences offer hope while others help to prepare for what ordeals may lie ahead. The other thing that the site offers is the chance to unburden your feelings which for the partners has to be positive, particularly for those in your situation. I am sure that you have and continue to help others every time you post and equally I hope that you feel the support for you and your OH. 

I wish you and your family a peaceful Christmas and New Year.

Love to you all

Kevan 

User
Posted 25 Dec 2018 at 22:36

Thank you Kevan.  Best wishes for the future.

User
Posted 26 Dec 2018 at 08:41
Even though your OH disease progression is relentless the support you are giving him is inspiring and gives hope to all of us Kentish.

User
Posted 13 Jan 2019 at 19:54
This is a looong post. Nigel is still here.

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.

User
Posted 13 Jan 2019 at 20:06
Sunday 13th January

A pretty good start to the day, up into the chair and then into the wheelchair to go to the kitchen/lounge. Kids visited and chatted about stuff and Nigel talked about the possibility of getting a wheelchair cab tomorrow to go home for an hour. The nurses felt that there shouldn't be a problem with this but that we should check with the doctor first. I can't quite believe the recovery of his mental acuity and his resilience and optimism. Twice in the last 2 weeks we have had family and the kids by his bedside to say goodbye. Long may this plateau last.!!!

User
Posted 13 Jan 2019 at 23:14
Such a hard read and brings back similar memories. I don’t think you should apologise for posting how it is, or feel responsible for the impact it has on others. We do no service to anyone by pretending that stage 4 cancer is easy or tidy when it is sad and messy and traumatic and heart breaking for everyone involved. You are doing a fantastic job of holding it together and your family sounds amazing.

You and Devonmaid can have half the comfort blanket each.

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

User
Posted 13 Jan 2019 at 23:15

Hi Kentish

just wanted to send you a hug and i hope you are managing to get some rest. I am praying things continue to go well xxx

Debbie xxx
User
Posted 13 Jan 2019 at 23:27

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

User
Posted 13 Jan 2019 at 23:59
Thank you folks, I'd hit a rough patch where I couldn't compartmentalise very well, a numbness took over and I could only manage the bare minimum as wife/nurse/mother. I have a wonderful support network but you've got to let them do it! I'm getting better at asking for help, accepting offers and relying on others to do "stuff". This is really hard to do when I have been let down by those who should be managing Nigel.

1) letter in the post, prescription penalty notice for claiming a prescription without a valid exemption certificate. Turns out, neither the chemist nor the gp actually filled out the forms in 2017...they both assured me it would be dealt with at his diagnosis and as we've only used our local chemist who knows us well, I've never been asked for the certificate number. I have left this with the gp to sort out....absolutely not clearing up that f*****g mess.

2)Friday, phone call from the Oncology clinic to do Nigels telephone assessment for the next round of Abiraterone. We saw Nigel's specialist nurse on the Thursday before he was transferred to the hospice, she cried, upset that Nigel has been dealt such a shitty hand of pca. I did feel brave enough to say that i didnt think they had dealt with the aggressive nature very well in that they didnt act until it was another crisis. She said she would cancel his next appointment and his review which is due in a couple of weeks as it was obvious he wouldn't be attending. She clearly didn't manage to remember to do it and I'm sorry to say that the nurse on the end of the phone bore my anger and despair at the incompetence of the specialist nurse.

Just 2 more things that make a crap situation harder.

User
Posted 14 Jan 2019 at 00:46

Originally Posted by: Online Community Member
Such a hard read and brings back similar memories. I don’t think you should apologise for posting how it is, or feel responsible for the impact it has on others. We do no service to anyone by pretending that stage 4 cancer is easy or tidy when it is sad and messy and traumatic and heart breaking for everyone involved. You are doing a fantastic job of holding it together and your family sounds amazing.

You and Devonmaid can have half the comfort blanket each.

 

I don't post much, Lyn puts it so much better than I can. I am in the early stages of what you are going through (my OH has bone mets), all this is totally new to me, not used to dealing with hospitals etc. and don't have much family around. Your posts have been invaluable to me, I don't know how you manage to post such goood information at such a time, but it is very much appreciated! It must be really hard for you.

I hope I can cope even half as well as you when my OH reaches this stage.

I really wish I could send more than a cyber hug, but it will have to suffice.

Look after yourself and know you have the support of everyone on here, even the ones who don't post, sometimes the words are hard to find.

Edited by member 14 Jan 2019 at 02:50  | Reason: Not specified

User
Posted 14 Jan 2019 at 01:39

Dear, darling Kentish,

I am sending all of you the biggest hug. I think you and your husband are amazing. You give me support like you wouldn’t believe. I only hope that I will be as brave as you when...

I still can’t bring myself to log information about my bloke’s test results on here. Everyone else has questions about treatment and prognosis. Whereas I’m petrified to  find out. His PSA was >6000 last June at diagnosis. That’s the first time I’ve ’revealed’ that! I bury my head in the sand and carry on regardless. Like you and your husband, we chat and laugh a lot. Cry a bit too. We write letters to each other and spend as much time as we can together. 

We too have talked about end of life and where Laurence will be. Our lad is 14 and so we too have decided that our home isn’t right for us and that it would be so hard for our son. He doesn’t know that his Dad’s cancer is stage 4. I am trying to pull the rug out from under him as gently as I can.  Laurence has had a bed in the living room since coming home from hospital in June but a hospice will hopefully  offer better care. 

Gosh, I’ve rambled on! Sorry. Insomnia is a bugger. This is my time to be alone. To be angry, distraught and howl to the moon. Sorry if I’ve been insensitive. I have had a single shot of brandy in a coffee and it has gone straight to my emotions! 

I send remarkable you, your warrior husband and  precious children, love and peace ❣️

Vicky xx 

Broken crayons still colour ❣️

User
Posted 14 Jan 2019 at 04:02
Dear Kentish,

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.

User
Posted 14 Jan 2019 at 08:22

Originally Posted by: Online Community Member
Sunday 13th January . Long may this plateau last.!!!

I really hope this is the case for you lovely people. Just wanted to say that my thoughts are with you at this time.

Like others have said I wish we could give you real hugs. 

Ann xxx

User
Posted 14 Jan 2019 at 10:51

Dear Kentish

thank you for posting this, i do think the reality is important for many of us who have to face it. We know it isn't going to be sweetness and light but my imagination can and does run riot. I have been through the mill this last month but  John is improving for some reason (thank god), he is still having hideous pain but he is moving about more now. i do wonder if what the specialist nurse said to me has made him get up and make a supreme effort so that he gets treatment .

Your husband is truly amazing, and your children are so impressive. You are a special lady, i know something of what this takes out of you and yet, we keep going.

i send you my love.

Devonmaid xxxx

 

 

User
Posted 14 Jan 2019 at 11:07

Thank you Kita, 

I had a chat with the hospice social worker this week and something she said stuck in my mind about how I am coping with the situation :

"You are doing at the moment and there will be time for being later."

She is quite right, there are times I cry so hard I can't breathe but most of the time I just work my way through the day as best I can in the knowledge that one day it will be different and I will have to fully embrace the pain in order to move forward with it.

Vicky, having youngish children makes it different, as a parent, you want to protect them from the nasty side of life. I've tried to remember how sad I felt at 29 to lose my dad so suddenly and to work out what would have made it easier to cope with. For me and the children that is being informed, there is a brilliant booklet from Macmillan about talking to teenagers and children and it also deals with when a parent is terminal. I've read it over and over and feel I am prepared to have the conversations when they arise.

When Nigel was admitted to hospital at the beginning of December for the low sodium, I sat the children down and began with. "There is never a good time to have this conversation so we are just going to have it now." I then told them that any infection dad had could be the one that he wouldn't be able to get over or that the hospital wouldn't be able to control one of the many things that were  failing and that it would be this that would cause dad to die. We sat and hugged/cried for a while and then my daughter turned the TV on, my son resumed browsing instagram and I went and washed up.

I don't ask them to "be brave/strong" or anything like that, nothing is forced, if they are sad they can be sad. Letting them have their space to process is important but then we carry on with normal stuff..."tidy your room, wash the dishes, bring the cups down!"

I can only hope I am getting it right and only time will tell. Everyone is different, it's good to ask for support even if that's out of your comfort zone as it may help you find a path through this.

Devon maid,  

I read your posts and really felt for you, the hospice have been great in making Nigel comfortable and in answering questions about how this horrible disease progresses at end of life.

Keeping on top of imagination is a struggle, the smallest thing can be blown totally out of proportion. I have reached the acceptance stage of grief, but little dribbles of denial and hope still creep in, I think that's inevitable. Nigel thought he might come home for an hour in a wheelchair cab today but after having a wash he is fast asleep again and unlikely to manage it. One the one hand this feels like improvement but on the other I can see it takes enormous effort for him to do anything and this is not improvement. 

Stau and Peggles,  thank you for the support. Your kind words are much appreciated.xx

User
Posted 14 Jan 2019 at 12:19

Oh Kentish.   I really do feel for you.  You are both so young too. On 16th  January it will be a year since we lost dad so this time last year we were going through the same as you and your children. It's heartbreaking.  I've no words of advice. Just wanted to send love and support your way x

User
Posted 14 Jan 2019 at 13:39
Love and strength sent your way. An awful disease at the best of times , but perhaps worse and sadder for the younger of us with young children also. Best wishes and hopes for you all xx

If life gives you lemons , then make lemonade

User
Posted 14 Jan 2019 at 18:45
Thank you Scabby cat, losing your dad over such a short period is really hard. Sending love and hugs across the ether. Xx
User
Posted 14 Jan 2019 at 20:52

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

User
Posted 14 Jan 2019 at 23:36
Monday 14th January

A good day but not a great day. Nigel managed to eat a few biscuits and a little bit of scrambled egg, he also managed a small chocolate ensure milkshake. But he slept most of the day, he looks so tired.

The hospice doctor agreed he needs to be reviewed and is contacting onco to see what their opinion is on continuing Abi. This is mostly due to what seems to be a recovery from sepsis, pancreatitis and stage 3 kidney failure. Nigel is obviously very weak but perhaps there is more time than we think. We will have a family meeting sometime this week to discuss what happens going forward.

Nigel had to have a full body wash this morning because his bowels opened with very little notice and it is very liquidy in order to reduce his pain on passing the stool, I do this with a nurse/orderly and it took us around 35 mins to get him clean and settled. He was so worn out afterwards he couldn't even manage to get in the chair. He's hoping that tomorrow won't be so messy and we'll be able to have coffee in the kitchen together. I've never taken such an interest in bodily functions, And I can't believe how often I discuss them 😁

User
Posted 15 Jan 2019 at 21:09
Tuesday 15th January

A pretty good day. I didn't stay last night at the hospice but I went back at 7.45 am after dropping daughter at the bus stop. I made us a cup of coffee and we chatted for a bit. Then I made some porridge, they have perfectly good porridge in the hospice but it needs to be when the moment takes him, which is never on their schedule! We shared the porridge and then he sat in the chair for a bit. We had visitors coming from a while away so he went back to bed until just before they arrived and then he got into the wheelchair. He had to go back to bed to open his bowels and this is still causing blood to come down the side of the catheter, there is no blood visible in his urine though.

Review with consultant : bloods to be taken to look at kidney function and Psa. Depending on the results he may start taking the Abiraterone again. A family meeting booked for Thursday to discuss the options around returning home. Nigel sounds so "normal" this evening, it's such a difference to last week. The consultant was also pleased at his progress and apparent recovery.

I've come home again this evening to chivvy the kids...6 piles of washing and chaos in their rooms. I feel more able to pop backwards and forwards now, I'll leave him to sleep for a bit and go home and do boring stuff.

User
Posted 15 Jan 2019 at 22:39
Your hospice sounds fab; the one where my mum was is held up by the community as a place of saints, local people raise millions of £ to keep it going and everyone says how wonderful it is. I on the other hand really struggled with their schedules. Mum ate so little and getting her to drink anything was a battle so when she fancied a cup of hot chocolate and I was told 'no' because she had missed the trolley, I lost the plot. It ended up with me 'kidnapping' her from the hospice with the aid of a private ambulance and, eventually, the support of the district nursing team and adult social care service.

For me it was probably as much about choice and flexibility as about dignity and respect and although caring for someone at home in the end stages is not for everyone I have now done it a number of times and feel that with the right support it is the best way for us as a family.

Has anyone put the bins out yet?

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

User
Posted 16 Jan 2019 at 13:33

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"

User
Posted 16 Jan 2019 at 15:16

Kentish, I’ve been reading through your story (as until recently I’d taken a much needed break from the forum), you have been through such a traumatic time with this illness and have handled it with such an amazing calmness and sense of love and patience.  Having young children must make the whole experience even more difficult, mine are in their early thirties and they are incrediby upset and sad to see their beloved dad so poorly, yours must be finding this so tough. Talking to our specialist nurse today I said that we are better at coping at the known than the unknown and this is certainly  how i have found it over the years that we have lived with the illness. I am a practical soul and if i can do something practical, then i can usually cope.  The other thing that keeps me going is hope. i feel so much better for having some hope, i know it can't last but for today, I have it. I hope you do too.

hugs to you and your lovely family 

Devonmaid xxxx 

User
Posted 16 Jan 2019 at 16:03

Devon maid, 

Hope can be found in so many places, mine varies from hope he will be here longer, hope that he won't when he's suffering, hope they can ease his pain, hope that this balance we now have will last just a little while longer. I don't hope for the big things anymore, for me it is soul destroying to have Nigel's treatments fail so quickly one after the other so like you I go with what is realistic and practical. I've just helped the nurse clean and change nigel, taking the lead so I can do this quickly and efficiently when and if we go home. I am young and fit and I want to look after him as best I can to make life as nice as possible. I also want to show the children how resilient we can be, I often feel the sentiment "fake it until you make it" if I keep doing it,  it just becomes the new normal and then it's not so worrisome. 

I too had a break as I felt there was little I could offer in terms of support to those still in treatment or the newly diagnosed. I didn't want to scare or make miserable people looking for hope and reassurance. But actually, Lynn is right, the more we share our stories the better prepared people can be for what sometimes lies ahead. I know I spent a long time looking at the stories of those who have already passed to see how they coped with what this disease can throw at your partner. I wanted to be for armed with knowledge so it wouldn't be so frightening and if I'm not frightened then neither Nigel or the kids will be.

I am glad we didn't hide Nigel's incurable at diagnosis status from the children as I think this has allowed them to actively grieve as we've gone along. The Boy has found this harder to do I think than the Girl but they are both moving forward, sometimes a bit slower than usual. Perhaps being younger they have a more optimistic outlook than we do as adults and of course, being teenagers they are beautifully self centered ! I think this is an armour in itself.

I hope the new treatment is successful and brings a new lease for hubby. Love and hugs xx

User
Posted 17 Jan 2019 at 11:43
Thursday 17th January

Results of blood test are low potassium levels and a psa of 235. Sodium stable at 134. Kidney function back up to 67%

I exclaimed to the consultant, crikey that's a climb in psa and he said that it wasn't usual for the psa to jump this high after stopping Abiraterone for just 3 weeks. I said that I had been told his psa had been consistently around the 30's for several weeks and he looked surprised. I asked him to double check that this was the case, not that it makes any difference really, the outcome would be the same. Nigel is not to restart the Abiraterone but is to start a potassium supplement. They will do this over the next few days and do another blood test next week. They are moving forward with a return to the home plan anyway.

Nigel managed to use a walker today and take a few steps. We had a rubbish night in the hospice, a noisy neighbour who had his TV on all night and kept turning it up even when the nurse turned it down/off. So both of us are exhausted, Nigel is fast asleep now it is quieter and I'm going to sleep at home tonight.

I'm pleased we are still moving forward but a little scared of being responsible for him again.

 
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