Making the most of it

Oh managed to get dressed today, first time in 2 weeks. He also managed a short walk down the road to my mum's for a bit of lunch. Last night we had a very nice bit of sirloin. I can't remember the last time we ate steak, it's been years. It was bloody lush.

He only ate half last night so he finished off the cold bit this morning, after a bowl of porridge.

But that was it for the day, he lost his appetite after that and didn't fancy anything later.

Oncology appointment :

A mixed bag, oh had questions such as, "why did it take so bloody long to do something about the urinary retention and haematuria?" and "do I have to stay on restricted fluids forever?"

Mine were "can you see whether the Abiraterone is having a positive effect underneath the current symptoms? "

"What do you think is causing the sodium loss and can it be treated or prevented?"

Onco asked oh what had been going on the last few weeks, oh's reply was "I'm not really sure, it's difficult to remember. "

Negatives: onco mentioned SIADH and Small Cell Carcinoma as likely reason for sodium loss and why oh hasn't responded well to the conventional treatments. He thinks oh has probably got a mixture. We'll know when the histology is back in a couple of weeks from the turp.

Positives: OH has a prescription for sodium supplement and a bumper pack of dexamethazone for a little jump start. Hopefully the steroids will make oh feel better and sodium means he can have a coffee whenever he wants.

Radiotherapy is also on offer if the haematuria continues.

Although oh's bloods were all over the place (oncos words), his bone profile showed an improvement. Based on this, if todays blood test shows a continued improvement (results are monday) then Abiraterone is to continue for another 4 week cycle. Oh doesn't have the dreadful bone ache in his hip and pelvis anymore, that is something to be thankful for.

I'm not surprised at the small cell, oh's cancer symptoms haven't followed a typical path for prostate cancer. In a weird way I am relieved that the onco has brought this up as it's a bizarre validation that I am not going crazy and I don't have Munchausen by proxy, I was right to think oh was poorlier than expected and knowing how relentless small cell cancers are (my dad had sc lung cancer) I can stop feeling I have failed in my duty to look after my husband. It's a vicious b****** of a disease and we never stood a chance.

Xx

Although his results were "poor" oh has been given another 4 weeks of Abiraterone. I didn't ask for specifics other than the sodium and hb, 123 and 93 respespectively.

The nurse said that there was enough of a responseries regarding his bone profile to continue. This is reflected in the lack of pain around the metastases in his pelvis and thigh.

He's taking 6mg of dexamethazone but it hasn't really has much effect on his appetite. He's only picking at a few things and still using metoclopromide for the nausea.

Chemist hadn't had the delivery of sodium supplement (I can't remember the name), should have it tomorrow.

He's passing 1 or 2 clots every time he urinates, specialist nurses said to expect this for the next few weeks....he's in agony each time and going for a poo is something else! Palliative care suggested taking oramorph and paracetamol at the same time and regularly and if this doesn't work then changing to zomorph slow release and using the oramorph and paracetamol as top ups when he goes to the toilet. Which in turn requires more laxative.

I'm really hoping the sodium supplement works so he can increase his fluids which will make toileting easier on his system.

Podiatrist coming on Wednesday, much laughter in our house and from the clinic at my ability to cope with pee, poo, sick and blood but not feet!

Omg I am not touching his toenails.....

The goal this week is to be able to come to the cinema on Friday to watch Fantactic Beasts 2, the goal tomorrow is to wash AND shave...

Sodium is 124 still and Hb has risen to 100.

Negatives: raised white cell count, no sign of an infection at the moment though, eg temperature, cough, red skin.

Nausea and vomiting though, I called the doctors for the results this morning and they said the doctor would do a home visit to see if he had an infection. Coincidentally, oh had been sick twice today and I wanted a doctor to come and see him anyway.

Doctor couldn't pinpoint an infection but wrote a prescription for prochlorperazine to try as an anti nausea drug.

Oh is really miserable, he's slept a lot of the day and feels sick when he is awake :(

Thank you Ladies,  I feel if I have a real life hug I won't be able to keep it together for the children. I'm waiting for our son to get in from his part time job (restaurant ), can't go to sleep until I hear the key in the door.

I'm not really doing much but it's not restful...I can't concentrate on the TV or a book and I don't want to go out, I want to stay near oh. I've woken him up twice since lunch to get him to go for a wee and to take the metoclopromide.  At least that's staying down and he's stopped being sick.

Family have popped in and chatted to the kids and me. But even conversation is hard to concentrate on. It's a horrible feeling of knowing I must still function for the children but actually I just want everyone to leave us alone.

Xx

Thank you Lynn, I love the humour and pathos. I've often said to my counsellor that I want to press pause on life, just for a little while so we can take a deep breath and rest for a moment from the journey.

I am a very sweary person, it takes a lot of restraint not to fill my posts with ******. According to the  kids, "Mummy has a potty mouth" I would very much like something to punch, or smash or burn....perhaps I'll chop logs and light the fire, that's acceptable arson and violent behaviour ;)

This current little detour appears to have come to and end!  After many, many trips for a number 2 since yesterday, oh announces his morning that he thinks he might get up in a while and watch TV...he has not had any of his medications since Thursday evening, Abiraterone,  prednisolone, desmopressin,  morphine, omeprozole. He took one paracetamol yesterday because he had a headache and has managed to keep down 4 doses of metoclopromide.

He has also drunk 6 small cartons of apple juice over the course of yesterday and last night.

I'm wondering if this was a bad reaction to the desmopressin, coupled with a really bad bout of constipation?

Oh has decided not to take any of his meds until Tuesday and then he's going to go back to restricted fluids for a few days before trying the desmopressin again.

His only pain is in his penis when he goes for a poo, no idea why but it goes away once his lower bowel has emptied. He's not planning on taking the morphine unless it's absolutely  necessary, he hates being constipated.

Right then, off to do something productive,  probably, when I've had another coffee. Xx

When he got up this morning he said he thought he'd got another uti, off I went to gp with a sample and they called later to say yes he has and to collect a prescription for trimethropin.

Still off his meds and only had 2 metoclopromide today.

Interest in food today, cooking kids tea and it's like the bistro kid from upstairs...."that smells nice!"

I'm so glad he's stopped feeling sick.

Tomorrow's plan: get washed.

A home hairdresser is coming to give him a trim on Friday, and we are having a new mattress delivered. You know you're old when this makes your heart flutter😁. It's the posh one that Premier Inn use, we stayed in one earlier in the year and it was like being hugged!

Oh is looking forward to it too, 3 solid days in bed and he's got a sore hip from laying on his side all the time.

Ugh, ,I went to bed early (8pm) because I'm shattered, slept until 11pm and now I can't get back to sleep :(