"I want you to enjoy your bike."

[mcatrophy]

It's been over two weeks since my last post. Since then she's had better days and not-so-good days, including more temperature spikes. She's been home a few times for a few hours.

The reason for this post is that we had a long discussion with her lead doctor (Ven). Below I quote the notes I jotted down after he left, so some details may not be quite right, but the significant points are.

Notes Friday 5th May 2017.

Talk with Ven, notes taken from memory after he left.

Yesterday's CT scan showed that the large abscess had grown, and there are several smaller abscesses.

The scan also showed there is a large clot in the inferior vena cava [the lower main vein that returns blood to the heart].

Because of the blood clot, she is receiving blood thinners. These are much stronger than she had previously, and side effects may lead to bleeding, in particular nose, bowel, possibly she will be sick and find blood.

Ven does not particularly want to replace the stents, nor to drain the larger abscess. Either procedure would be painfully invasive, and there is no guarantee that these procedures would help with the infection.

Ven questioned on whether we wanted to continue the antibiotic treatment to deal with temperature spikes or to use morphine and/or other drugs to mask the symptoms. My personal feeling was to continue using the antibiotics in the 5-day courses up to the point when they don't work any more.

Ven also asked whether she wanted to die in hospital or at home. Our consensus was probably in hospital.

Ven asked if we wanted his opinion on her prognosis, we said yes. He said she probably had weeks to live rather than days or months.


I've put some sort of a timeline of events here.

​In the mean time, I've been having a tooth implant. For whatever reason, this failed on the final tightening of the crown onto the implant - my bone cracked. I'm told this is extremely rare. This was Tuesday, so Wednesday the dentist has done a new implant (wider, deeper into the bone, more cow-bone added to help strengthen it). I've now got a very swollen face. The final (hopefully) crown fitting is in six weeks. Nothing compared with what wifey is going through, but it doesn't help.

 

[rogdeb]

We don't like this at all ^^^^

Sorry, sorry sorry for these trials Mac :-((

We're in your corner, as always, if that helps at all.

Rog n Deb

 

[hppants]

Holding virtual hands with Rog and Deb and the rest of us, my friend. I have no idea what you are going through. Holy cow. Take good care of yourself, my friend.

 

[Fred W]

No words sufficient. +1

 

[Redfish Hunter]

No words sufficient. +1

+2

 

[TripperMike]

Just know Mac there is true empathy from many of us here for what you and your wife are going through.

At our ages (forum membership of old pharts), we've all lost near and dear loved ones, and it never gets any easier.

To watch your wife suffer has got to be tough.

 

[gregory]

Ditto and +1 on us being here for you and your bride. Wish there were words.......

 

[HotRodZilla]

Dang Mac, I wish there was more we could do. I think about you every day. Always hoping for some movie miracle.

 

[YummYam]

Our thoughts are with you both, how unfair is it?

No help to you but sharing the awful burden. Cousin Rob in UK was diagnosed with same two weeks ago, sister Jill is having tests for same.

 

[NTXFJR]

Sorry to hear this Mac. May her journey be as peaceful as possible during this time of trials.

 

[yanktar]

MCATrophy: As usual, I haven't been around in a good long while and I just read all the way through this thread to today's posts.

I cannot imagine what you are going through. My wife and I will be married 30 years in August and I have never, ever been closer to another person in my life. I watch her push herself, far too hard, and I worry, I worry.

I don't know if this is any comfort at all, but here goes: When my dad found out his "pneumonia" was lung cancer and he had 6 months to live, he sat down with me and each of my brothers separately. We didn't actually sit down but took their little dog out for a walk out on the Croton Aquaduct. It was a cold, overcast February day. Dad said: "I have to talk to you about this. I'm not afraid to die. Everyone dies, I've always known that and I accept that. Life is finite. But I've lived a long and interesting life. I've seen and done many interesting things, married a wonderful woman, seen all my sons grow up, marry and have families. I'm ready but I've got two things I worry about. I worry about your mother. Promise me you'll always take care of her, you and your brothers. And I don't want it to hurt. That's it."

I don't think I've ever been prouder of my dad. He always kept his word, never broke a trust, and my brothers and I, who had difficulties getting along over the years, had learned from him that you never break a promise, much less a life-promise like that. We didn't because he would have been disappointed in us if we did. And we 3 have gotten along far better ever since. Dad taught us all our lives and, in the end, he taught us how to die. I hope when my time comes, I can have a trace of Dad's sanguine acceptance of death, the recognition that no one here gets out alive.

Again, I don't know if this is any help, but I get the distinct feeling your dear wife is such a brave soul, probably more worried about you and the family, than about herself.

All the best wishes, MCATrophy.

Yanktar

 

[Uncle Hud]

<sigh> Sorry, man. Really sorry.

 

[Frushlorton]

Mac, at a loss for words as I just stopped in to read for a bit and stayed. Really wish we could do more, something, anything to ease the pain for you, your wife, and family. Sending prayers for you all.

Steve

 

[Mihalis fjr]

Really sorry to hear that not so good evolution mcatrophy.Thoughts and prayers for all your family and for you..

Always hope for a miracle..Sometimes happens..

 

[SacramentoMike]

I've thought about you and your wife a lot these last couple of weeks. Didn't know if not hearing was a good or bad thing, but kind of didn't want to see another new post out of fear that it wouldn't be good. You hope and pray for the best, that's human nature, but always fear the worst--that's human nature too, I guess.

I don't have a thing to offer but sympathy but I'm glad you can share and maybe vent here, though. Hope it helps you some.

 

[mcatrophy]

Doctor says only a few days left, probably won't survive the weekend.

She's staying at home, not our original plan, but circumstances dictate - she was at home when she became very bad.

She'd been discharged on Friday a week ago. Not too good over the weekend, but much better on Tuesday. I bought a wheelchair, we took her to a favourite farm shop a few miles away, chose some food for the evening. Also that day some flowers arrived, sent by my motorcycling friends who live in Guernsey. Not the only flowers she has received, but she did particularly like them.

That was her last "good" day. That evening and the next day we were giving her a lot of oral morphine plus some nurse visits for injections of morphine. Midday Wednesday our doctor came, said that she was obviously not absorbing the oral morphine, the amount she's taken would have been fatal. He changed the prescription for her intravenous syringe, the morphine levels are now very high. There's also a muscle relaxant to reduce spasms, as well as other drugs.

Since then, she's hardly moved.

We had originally decided she would end her days in the Macmillan ward of our hospital. The doctor said that the trauma of being carried down stairs and an ambulance ride would probably end her before she arrived. Also, there isn't a bed available in the Macmillan ward at the moment, she would go into an acute ward which would be all hustle and noise. Here she's lying in our bed, her surroundings are familiar and peaceful. And the Guernsey flowers, which have lasted well, are in our bedroom where she would see them if she could open her eyes.

Her breathing is laboured, sometimes bubbly - she can't clear her throat or swallow saliva or phlegm. She can barely move, can't speak, but we know she is still aware a lot of the time. Very difficult to know if she's in pain or too hot or cold. We've all spent time talking to her, also amongst ourselves about family and events, hoping we can at least distract her from what she is experiencing.

She's not eaten or drunk for two days.

We are having carers come in four times a day, they wash her, change her nightie, sheets and so on. This morning, they said she was trying to help them. This evening it was more difficult, she now seems very sensitive to being touched, let alone moved.

We are also having sitters most nights, one started last night, so we (son, daughter, her sister and me) can get some sleep. Most of this is funded by the National Health Service, the rest by the local Treetops charity. I will be making a suitable contribution, and to the Macmillan organisation.

I've talked to our doctor about what to do afterwards - there is inevitable bureaucracy.

I've also spoken to a funeral director. She wants cremating, she's claustrophobic, so doesn't want to be shut in a coffin forever. She's told us the sort of music she wants at her funeral (Chopin piano pieces). She's said we are to do a buffet in our house afterwards. She's not told us where she wants her ashes scattered, though many years ago she did jokingly suggest with her father, whose ashes are in the grounds of a crematorium some 120 miles away, I want her nearer to her present home and family, so we will probably put her in our (her) garden that we've (she's) built up over the years.

Just to add to things, for the last few days our health service computer system has suffered from this blackmail virus thing that's going round, making everything more difficult for all concerned. There have been several occasions when we were directly affected (drug ordering and deliveries, notes on her condition to the various health professionals and carers, nurses getting messages about her needing attention and the like).

It's taken me many hours to write these few words, I've had to make changes as the day has unfolded. I started only wanting to say that the end was near, but I'm doing a bit of out-pouring.

We are very much at that stage where her ending will be a relief for her and for the rest of us. Not sure how we're going to cope, but we will have to.

 

[Uncle Hud]

My heart is heavy, brother. Know that you have LOTS of support here.

 

[exskibum]

Prayers for you both. Love.

 

[bigjohnsd]

Mac, with you here in South Dakota. Sounds so much like what I went through with my Mother. Peace Brother.

 

[wnyfjr]

I cannot even imagine the feelings you and your family are experiencing right now, and no words I can offer seem appropriate. Please know that you are not alone in spirit, and that your other 'family' is here to offer whatever help and/or consolation is possible during this difficult time.