Making the most of it

User

Posted 09 Mar 2019 at 09:34

Morning Kentish

I'm so pleased that the move to the hospice has gone ahead, i am hoping that radio silence means that you are getting support and some rest and nothing sinister. so lovely of you to send a hamper into the ward staff, i have no doubt they will appreciate it and remember you both. I’m wondering how the kids are doing? Their lives are so disrupted but I know the hospice have specialist social workers who can help them, so that's good. I’m so glad that N was able to speak from his heart, if not now then when?

Teacups, can I ask if you are able to get Hospice support? It would really help both of you. Life sounds pretty grim for you at the moment. We are ok right now, that’s all I can say, the little break did us good. I’m going on my annual retreat to Portugal in two weeks, a week in the mountains, no food or caffeine, just juice and yoga and sun and my daughter for company. No PCA for a week, worried sick about leaving John of course, but going (I think) as it does me such good.

I'm rattling on hoping that silence means good here.

thinking of you all

with much love

Devonmaid xxxx

User

Posted 09 Mar 2019 at 10:05

Thanks for your thoughts everyone.

It's been a rough week in many ways. Excellent transfer to the hospice on Monday, conversation with the doctors on Tuesday not so favourable. N told them his plan, go to radiotherapy, get on his feet and come home again. They were encouraging that that is what we'll all work towards. I talked to them afterwards about how realistic were these goals, not to take away hope from N but for me to gauge how much encouragement I give, to get a balance between him feeling hopeful but not under pressure to do whatever. I hope that makes sense.

We are going to have another review on Tuesday as they said they needed to have him here for a little while to get a better picture.

Thursday morning was awful, he asked to go home and they set the ball rolling straight away. He was so miserable, tired from so many nights of broken sleep and the dawning realisation that he was unlikely to start the Enzo or go for radiotherapy. He was supposed to go Thursday morning to the planning scan but decided Wednesday evening he was too tired and wanted a rest from interventions. It took a couple of hours and eventually a conversation with the social worker and nurse to adjust the sleeping tablets before he changed his mind and cancelled going home. I would never say no but I am terrified of having him home and getting back on the merry-go-round of 999 and long stays in hospital.

2 nights of good sleep and he's a little happier.

Nausea has been a problem and they have adjusted the antisickness drugs to combat this but the downside is he is a bit more spaced out.

It's lovely to be able to go back and forth and for the kids to pop in and out, it's a more "normal" existence for the family but this time it feels different. The only "hope" I have is that he can be medicated to a discomfort free place and stay there.

I think I've cried more than ever this week Teacups, thinking of you and all the others who have reached this place.xxxx

User

Posted 09 Mar 2019 at 12:18

Oh, Kentish, I was worried that it hadn't been a good week. I'm glad at least that it is easier for you and the kids to go in and out. I do hope you all get a bit more sleep, and some settled time together.

Devonmaid - thanks for your concern. We have support from a palliative team. And I have made an appt for some counselling over the phone. H in some ways is well, but has bone mets and fractures and has lost a lot of strength. They are worried that any weight bearing may make the fractures worse, so he is on bed rest. Cognitive function was not great before this, and morphine hasn't helped. But the strong will is still there. So he feels that he is in jail, and I am the prison guard. Really, really don't want the end to come with him hating me. Your retreat in Portugal sounds wonderful.

User

Posted 09 Mar 2019 at 12:48

Dear Kentish; Teacups and all others in a similar situation my sincere good wishes and prayers go out to all at such painful times. Living with Prostate cancer is certainly a prolonged and challenging experience!!! My love to you all xxx

Tom

User

Posted 09 Mar 2019 at 15:04

Thanks Tom, that's very kind of you.xx

DM, I didn't see your message when I uploaded earlier, I must have been writing it as you posted.

The kids are "ok", I think this is as good as it will get. They realise that N is iller than ever and we have talked about him maybe not being able to come home this time. It is easy to just sit with one another at the hospice and they need to be with me and N after such a long period in the hospital where they only visited a few times.

They aren't interested in the social workers, they have both had initial meetings and then declined anymore. I think they talk more to the staff especially the auxillaries/csw's, they are very down to earth and just come straight out with the difficult questions.

Lots of people offer to sit with N so I can have a break/rest but at this stage I don't really want to, I'm not sure everyone understands this or me, I want to sit while he's sleeping, I don't feel any desire to get away from it and I just worry when I'm not here. I am not "waiting" we are just being together. We haven't had long enough together and I don't want to miss a moment, I want to make the most of the moments when he is wide awake and it's so easy to miss these.

Everyone does it differently, and at the moment I need to be with him to make me feel ok.

I hope you are able to go to Portugal, it sounds lovely, I would add surfing into the mix for my ideal week away, and catered, I'd never manage a week without solid food ;) In my mind, me and the kids will be going away together to readjust at some point this year. I hold onto that thought as a point of light in the future.

Oh Teacups, I know what you mean, I really don't want N to resent being kept at the hospice or having any interventions that make things worse, it really is my one of my biggest worries. I try to give N control over everything he can, when to be washed/changed/eat, what to eat and who visits and what drugs he wants/doesn't want otherwise I feel like he has no control anymore and is just being "kept".

I hope the support you get helps you through this really difficult time. Thinking of you.xx

User

Posted 09 Mar 2019 at 17:33

Kentish

Thanks for the update, it feels justifiably sad as you relate the reality of this stage for some men. On the plus side the Hospice is easier on the family and the visiting more ”normal”. I get the kids point of view with the formal counselling, its often easier to be open with people who flit in and out but who you sort of know.

I would also be scared of taking him home, i don’t know how it would be possible to cope. I totally understand the need to be at N’s side, this is a time to do what you and your children want to do and forget everything and everyone else. Your family has to come first.

A week drinking juice makes you feel wonderful, its easy to do, no food smells so not hard. Lots of yoga and walking, fresh air and sleep, sounding nice yet? Nearly always a celeb or two there (posh or what?). It revitalises me and helps me get through the stress of this illness. Only holiday you come back looking great and ten pounds lighter from!

Hugs and love

Devonmaid xxx

User

Posted 09 Mar 2019 at 22:18

Kentish

A very moving post. Thinking of you, extra big hugs to all you ladies.

Thanks Chris

User

Posted 11 Mar 2019 at 00:33

Dear Kentish,

Sending the biggest hug ever,

love from Vicky xx

Broken crayons still colour

User

Posted 12 Mar 2019 at 23:16

Thank you Vicky, I hope you and your family are ok ish. I get proper fed up of people asking me if I'm alright, of course I'm not alright....but I'm ok ish. I'm not a collapsed heap of snot covered tears and I've washed every day so I think ok is about right.

Doctors rounds in the hospice today and N asked their opinion of his prognosis as he was talking about coming home in a few weeks and building himself up etc. They asked him if he really wanted to know, he said yes and they said 2 months at a stretch. It was heartbreaking, I really don't think he thought they would say such a short time. They left us to talk about how this affects what he wants to achieve in the next few days and weeks, mostly he just wants to come home for a bit, we talked about staggering this if he is able to get in the wheelchair but I'm not sure he has the energy.

I collected the enza and it's sitting on his shelf, he's thinking it may knock time off if he reacts badly to it, who knows, I really want him to take it but I'm also really afraid it will make him poorlier, the doctors are on the fence on this one.

I talked to both the children tonight about today's meeting, they're smart kids and knew it was bad but it's still really hard to hear. Lots of tears and hugs, they were both brave enough to say they would rather Dad stay in the hospice as it's so likely he'll be rushed back to hospital if he comes home. We had a lovely belated birthday lunch at the hospice today with the kids and some other family members, they are so good at chattering on about school/work etc. N doesn't join in much but likes the buzz around him.

I'm hoping for a few more of those days.

Pain/nausea is under control, bowels are an ongoing issue of continuous evacuation or a day of not going and N feeling desperate to go but unable to. No happy medium to be found.

When I left tonight he said "I haven't given up you know" I don't think people always give up, they do what they can until they can't. I don't want him to think we felt he gave up, it's amazing he's still here after the catastrophes he's been through.

Sending hugs out to all those who need them this evening.xx

User

Posted 13 Mar 2019 at 00:42

Oh, Kentish, how hard it is. Sending hugs.

Your kids are stars, and obviously a credit to you and N.

User

Posted 13 Mar 2019 at 02:03

Dear Kentish,

I’m heartbroken for you all. I‘m at a loss of what to say. So, I’ll do my best to reassure you that you, N and the kids are coping remarkably and are truly amazing. You really are making the most of it and still managing to create magic moments to last a lifetime. I think that N knows, that you know, that he hasn’t given up. He is so thoughtful and is making sure that he tells you before you go home.

We aren’t at this stage yet but it’s coming. On Laurence’s initial oncologist report it states ”12 months overall median survival.” He was admitted last June and had tests during his two week stay. DRE, CT scan, MRI and biopsy. The subsequent results formed the basis of his prognosis. We too are making the most of it. Today we watched two episodes of ’The Wire’, one episode of ’Mother, Father, Son’ and an episode of ’Vera’. Rock and roll it ain’t but L made us a lunch and we sat cosy and warm while the rain poured outside. L dozed at times (The zomorph zzzz’s) and the dog snored. It’s at these times that I have to force my mind to not wander too far into the unknown.

I am at work tomorow so i suppose I’d better try and sleep. I’ll send you love and strength to face the day ahead.

You are in my thoughts. You are remarkable.

love from Vicky xx

Broken crayons still colour

User

Posted 13 Mar 2019 at 07:11

Thanks Teacups, Thanks Vicki.

You're right, this is hard, it's a mental, emotional and physical exhaustion. The people around us give us the support to keep putting one foot in front of the other.

Cosied up in this horrible weather sounds lovely, N's got a window bed and a radiator so we can watch it but feel snug too. Fingers crossed for a lovely boring uneventful day.xx

User

Posted 13 Mar 2019 at 07:42

Oh, ladies, just at the moment the thought of being cosied up sounds blissful. Hope today is indeed a boring, uneventful one, Kentish.

We are back in hospital, sadly. The last week at home has been very difficult, and sadly in H's very confused state he has decided that I wasn't getting him the help he needed, so is now so angry with me and doesn't want me near him. Heartbroken doesn't begin to describe it.

User

Posted 13 Mar 2019 at 08:41

I am so sorry. You know him better than anyone ans will understand that he does not mean everything he says. I can't begin to imagine what you are going through but my prayers are with you.

User

Posted 13 Mar 2019 at 14:09

Oh Teacups,

That's horrible for you both, I hope they are able to settle him so he is able to be more like himself. Thinking of you.xx

User

Posted 13 Mar 2019 at 15:22

Originally Posted by: Online Community Member

Teacups I feel so much for you. Hugs and more hugs. Hope he comes to realise that you have done your best in very difficult circumstances.

Kentish Hugs to you as well, keep going you are doing so well.

User

Posted 13 Mar 2019 at 23:02

Oh Kentish

so sad to read that they’ve given a timeframe, it could be right but maybe not, its always hard to know what to wish for when someone you love is so ill. i have a very strong memory of my most loved brother in law, throat cancer, one year prognosis, made three months and looking at him and knowing that there was no way he could carry on, it helped me, if not my sister at the time, though yes, it does now with the passage of time, he was 52 years old. That’s one of the many reasons I feel so lucky that we have had more than eight years, despite the challenges along the way. I hope what I’ve said isn’t insensitive, I think we tend to be realists here, with our humour and our empathy and our dogged determination to say it like it is. Please forgive me if I have been insensitve, I hope you know that I’m trying to say that it’s not wrong to want it to end when the time comes, even as painful as that is. crying now at the thought, its very raw for us isn’t it and brutal.

I think you are all immensely brave and an amazingly loving family, your childen are such a credit to you and their chit chat must come as a welcome distraction and a joy. They sound so mature even though what they are going through is the worst thing anyone can imagine.

I hope that N decides to stay put but i think hospices can arrange for short home visits if you both want it and can cope. My friend (Mo, who was a massive contributor here) brought her beloved Mick home for one day, he had SCC so it was quite something to organise.

Teacups, my heart goes out to you, not only do you have a seriously ill husband but you are getting all the blame, it’s so unfair. I hope with the right meds he will see that you are doing your best, what more can any of us do. I know my sister has a lot of unresolved conflict from being shouted at during the last weeks of her husband’s life, it was genuinely awful and has left lots of mental scars. Understanding it is one thing, forgiving is another and easy to do given the situation, but forgetting, no never, that’s much more difficult. It cannot be resolved, only forgiven and left in the past when the time comes, but that has taken a long old time, and will never completely fade. I think that’s where hospice support really can help as she had none until his last few hours on NYE, yet another one our family would like to forget - it always seems to be NYE that bad things happen to us. Hugs.

sorry for the ramble, no alcohol was consumed, just thoughts on a sad subject, close to my mind for obvious reasons. How will I cope, when this comes my way? I hope i can learn from those who have trodden this sad path before.

on a brighter note, John seems to be quite reasonably well at the moment, bloods taken today in prep for oncology on monday, our first results since he started on the Enza. I am truly grateful for each and every day.

Thank you both for updating, my love goes with you both.

with love

Devonmaid xxxxx

Edited by member 13 Mar 2019 at 23:07 | Reason: typos as usual

User

Posted 14 Mar 2019 at 01:19

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

User

Posted 14 Mar 2019 at 07:48

What wonderful, strong and loving ladies you all are. When i read your updates i am usually driven to tears. I hope i have learnt from your stories to understand better my other halfs journey is parallel to mine but not exactly the same.

All i can say is i send you all my love and hugs and hope today is a good day for you all.

Phil

User

Posted 14 Mar 2019 at 09:18

Teacups

Your update made me so happy, mad isn’t it? Hospital admission and meds makes you happy, are you nuts woman! Well, in this case that your lovely man is now comfortable and more the man you know and love is so wonderful, I cried to read it. I have sometimes been shocked about what wives have had to do to care for their love mainly because my sister was left to it as she is a nurse, but she was his wife and that was forgotten 15 years ago, so I’d rather assumed that this wouldn't happen these days, but then nursing care has changed so much too in that time. When my daughter gave birth recently, i noticed the next day that her hands were covered in dried blood, she was bed bound and hadn't been washed after a traumatic birth and post natal surgery, well some bits had been but not her hands and she'd been feeding a new baby. nor had they offered to bring water to help her brush her teeth, simple things that are about care, decency and comfort and they are missing. There was also lots of blood up the delibery room wall, and it wasn't recent, shudder.

another ramble, sorry!

We had a weird night, John woke me saying he couldn't breathe, his chest was so tight. I took his blood pressure (as he is on Enza) and it was very high, but in the orange zone no the red. I gave him his inhaler (he has mild asthma) and pondered if a heart attack was underway. Then he promptly fell asleep. Was it a panic attack? A dream where he was scared, something real? I hesitate to mention to the oncologist on monday in case they withdraw our lifeline of Enza. Think I might see the GP, right now I'm in ponder mode.

Thank you Phil for your lovely comments, not all PCA goes this way by any means. But this forum is a lifeline for us all and even sharing the horrible bits is cathartic.

Love Devonmaid xxx

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