"I want you to enjoy your bike."

[mcatrophy]

We are hoping that she can come home for a while.

Last week she had a severe infection. Her temperature went up to 40.7C (105F). She was shivering like I've never seen anyone shake before. The hospital staff firstly had to get her temperature down, so they forced cooling air over her, cold compresses, and paracetamol intravenously - luckily she had a suitable cannula already in place, there is no way they could have got a needle into a vein with all her shaking.

It took several hours to bring things under control. "I never want to go through that again, just let me go."

A scan showed that not all of her liver is draining properly. We were told that, because some of the ducting is still blocked, such an infection is likely. They took blood to find what bacteria we were up against, meanwhile putting her on a cocktail of antibiotics to smother the infection. Later, having identified it, they reduced the antibiotic to one.

Now she has a permanent infusion pump, subcutaneously delivering a cocktail of painkillers (mostly morphine), anti-nausea, steroids and the antibiotic. Maybe a few more things. She is able to take additional drugs orally now her nausea is controlled, and if she does need additional pain killers they will adjust her infusion cocktail to suit.

She is now a bit more comfortable. The pain and nausea are under control, for the last few days she has been able to eat and drink - she has been something like four weeks without being able to digest any food, and fluids had mostly to be given intravenously. She's obviously been losing a lot of weight, this has now stabilised. She has even joked that this was something of an extreme way to lose weight!

Her lead doctor now says she is medically fit to go home, but there are things to organise, such as the daily visit of a Macmillan nurse to change her infusion syringe (even if I could do it, I wouldn't be allowed to owing to the controlled drugs). She has been given a "stair test" to see that she can manage our stairs, apparently she "passed with flying colours". That's typical of her, she will gear herself up to whatever challenges are thrown her way. However, she is very weak and unsteady, we hope this will improve as her weight builds. Anyway, we are hopeful that she will be released tomorrow (Friday) afternoon.

Today I borrowed a wheel chair, took her around the hospital. She knows many of the staff from her 25 years of voluntary work. There were hugs, kisses and tears.

I've bought a reclining chair to help her relax. I've also organised a disabled parking badge. She wants to be able to go to our local shops, maybe buy some bread. Normally I'd have said "But that's my job", it being my excuse to get out on the bike (as I've posted several times before). Somehow that doesn't seem funny anymore.

Anyway, I'll have her home for as long as we are able to look after her (the family will all help), try to keep her as comfortable as possible, take her out as much as we can. Then, I'm afraid, it's a case of waiting for the inevitable.

I've always said that life isn't fair. This, to my mind, is the worst example imaginable.

 

[Uncle Hud]

Sending another big dose of good vibes across the Atlantic. I hope your bride will be more comfortable at home.

 

[Fred W]

I feel for you and your beloved wife, my virtual friend.

The only fair thing about our lives is that it is pretty universally unfair to all of us.

I wish you both the best possible in these trying times.

 

[Niehart]

Sending another big dose of good vibes across the Atlantic. I hope your bride will be more comfortable at home.

+1

 

[Redfish Hunter]

No sir, life is not fair. As Fred points out it is universally unfair. And the end is never fair.

I ask you to consider that there are other factors tipping the scales in your favor. How many of us get to experience a relationship as happy as yours for as long as you have? Try to focus on the happiness of loving someone that deeply and knowing that person loves you back just as strongly. Some of us will never know what that is like.

Stay strong, when you need to cry we are here for you.

 

[juniorfjr]

Sending another big dose of good vibes across the Atlantic. I hope your bride will be more comfortable at home.

+1

+2

 

[exskibum]

I've always said that life isn't fair. This, to my mind, is the worst example imaginable.

No doubt. Feeling your pain, hoping the meds significantly diminish hers, and wishing you both the most comfort earthly possible. This seems a moment when knowing that enduring suffering makes one stronger is utterly valueless. All you can do is be your best self, for her, as you endure your own excruciating pain.

 

[hppants]

MCA - it is hard for me to fathom the courage it took for you to write this. Putting that in writing had to be hard on you. I hope sharing this with us gives you some sense of support you have from your friends. Know that although we cannot comfort you in person, we are all here with you in spirit. Although we cannot know for sure, we certainly hope that our spirit, prayers, and thoughts will be of some use to you and your wife during this very difficult time. We hope that she remains comfortable, and is able to have some quality of life at home with her family.

But also know that your selfless words provide valuable and personal insight to each of us too. They remind us that there are some things we don't get to decide. Some things we cannot control, despite our very best efforts. They remind us to take frequent personal assessments of our priorities. To care and cherish what is really important, and dismiss the rest as the nuisance it really is. Your words remind us to live each day in happiness and peace. To do what makes us happy, and in the event that we are not happy, to take meaningful action to correct it. You remind us to love. To compromise. To agree to disagree. To abandon grudges and animosities and relieve ourselves of the exhaustion and the wasted time associated with them. To tell those that we care about exactly and precisely what they mean to us and how proud we are to know them, rather than simply assume that they know.

Indeed, this friendship thing works both ways.

Please excuse me. I've got a phone call to make....

 

[Teehaml]

I am at a loss for words for you mac. Stay strong. Miracles do happen. Prayers for you and your wife.

 

[StephanM]

Glad you're reaching out when you need to.

And it's a good reminder not to take anything for granted.

 

[phroenips]

Nothing else I can add, I only wanted to pitch in my hat for the thoughts and well wishes as I wipe the tears from my face.

 

[SacramentoMike]

Big big lump in my throat. God bless you both, Mac.

 

[gregory]

I wish there was something I could add to ease your path. Enjoy those trips for bread.

You are all in my thoughts

Gregory

 

[Hudson]

MCA, when you get lost in those dark moments where you question all the usual whys and it's easy to dispair, remember this:

You have been given an opportunity to spend her remaining moments easing her fears, pain, and sadness. You get to replay your best moments and memories as a couple while she is still with you, and you get to share and show your love to her in the most noble way possible. She'll carry that with her, and you'll have that to comfort you your whole life. It may sound ironic, but that is a rare gift and one that will bring out the true best in both of you and those around you.

 

[Bugnatr]

A huge +1 to Hudson's comments. I'm sure I'm not the only one who thinks about you from time to time and wish we could do more. Hang in there as best you can.

 

[HotRodZilla]

Hope you're doing ok Mcatrophy. I think of you and your wife when it's quiet, and wish there was something we could do to help.

 

[mcatrophy]

Thanks for your thoughts.

I last posted on Thursday, a week ago (excuse any time/day differences from the USA or other parts of the world). She came home on Friday, slept well overnight (I didn't, too worried about rolling over and hurting her or pulling on the infusion pump line!). She had a good day at home on Saturday. With some support, she walked round our garden (the garden is one of her pleasures). District nurse came in to change her infusion syringe. Went to bed in the evening as normal. But, almost inevitably, things stopped running smoothly. Before I was asleep, she said to me "It's happening again", this about midnight.

I immediately tell her sister, who was staying with us (to help to support us, she is a retired theatre sister, at one time was in charge of a liver transplant theatre - how ironic). To cut a very long 4 hours short, we phoned for emergency services, doctors came, and an ambulance took her back into hospital, where her fever was eventually reduced.

She was devastated. Not only did she suffer the rigour (it was dreadful to watch, let alone experience), but Sunday was our two grandchildren's birthday - three years different, but the same day. She was (the amateur) midwife to the second, born on the landing floor at the top of my daughter's stairs. So, not being able to go over to them on their birthday was a major blow.

She has remained in hospital since. They have given her further CT scans to make sure they know the seat of infection - it is a pool of undraining bile. They have done more tests to determine what antibiotic would work, she is being put on a more-or-less indefinite curative course (not that they expect it to "cure" the infection) given intravenously, instead of a maintenance course orally, to try to keep the infection from mushrooming again, but no guarantees. When she comes home she will have two daily visiting nurses, one to change the infusion syringe, the other to give her the intravenous antibiotic. We are hoping both visits will be in the morning to give freedom in the afternoon to go out a bit, she doesn't want to be stuck in the house the whole time.

Medically, she could come out tomorrow, but it depends on availability of the visiting nurses. I'd rather she remained in hospital until after the weekend - inevitably outside emergency medical staff are less available, and the emergency services are generally more busy with drunks, assault victims and the like over the weekend (what a world we live in).

I have nothing but praise for all of the medical services and staff we have encountered. Always busy, many obviously overworked, and some of the patients in the liver ward where she is are difficult, drying-out alcoholics and other ne'er-do-wells, who can be violent. But the staff always take care of her as required in a sympathetic as well as professional manner. Even the support staff, hospital cleaners, caterers and the like are friendly and prepared to talk and to take time while she chooses her meals and so on.

As she was coming out last Friday, I went to the ward sister to thank her for looking after my Better Half. She said "That's quite all right, she's a pleasure to look after, we all love her".

 

[TripperMike]

As difficult as it is for us to read about what your Better Half is going through, it's got to be so much tougher to write about. Thanks for keeping us updated. We do care. I sure hope the medical staff can get a handle on that infection. It would be great to hear that she got to return home soon. For both of you.

It's comforting to read that she has excellent medical staff looking after her. Caring and competent doctors n nurses are truly a blessing. Knowing they care so much about her is reassuring.

Stay strong mcatrophy and may you two still get to enjoy some peaceful moments together.

 

[LKLD]

Your pain, worry, and frustrations are evident in your posts, and I hope/pray that you find relief with all of them.

I am sincerely distressed that this is happening to you both,

Rob

 

[hppants]

(sniff sniff)

I'm sorry to hear the transition home is not smooth, but I'm hoping with the rest of us that things will improve, and improve soon. I'm sensing the frustration in your writings. I know there is no time to waste. Like you, I want so bad for her to be comfortable and be able to enjoy some quality of life. Missing the grandchildren's birthday must have been real hard.

I'm also sensing that clearly, she is quite a fighter. I hope that helps ease her pains.

Since I don't know anything about UK medical services, I'm very glad to hear she is getting professional, effective, and sympathetic care. I really hope that the doctors figure out what to do to allow her to stay home comfortably.

What about you, MCA? How are you holding up? Are you getting help from family and friends? I don't know if this is even relevant, but I'm compelled to offer a suggestion. Please resist the urge to hold the world up. Fight it at all costs. If you drive yourself into the ground, you won't be any good to her. And you will be cheating yourself out of the pleasure of being with her during this limited time.

On Monday, my bride and I will celebrate 30 years of marriage. We have no special plans. We just decided to spend some uninterrupted and intimate time together. I have some things I want to say to her. Things I have been putting off for a long time, and for no reason other than my stupid and ridiculous pride and asinine attitude. On Monday, I will find courage to look her in the eye and say these things. I will tell her how much she means to me and how so very grateful I am to have had the pleasure of her company for 30 years, and for however much more time we have. And I will tell her emphatically that I will NOT wait another 30 years to remind her of my good fortune.

You can thank your wife sincerely from me for that. And I thank you for it as well, my friend.