Day 6 after first Docetaxel session, still in bed

Hi,

Me again...

OH should have had his second session of Docetaxel today, but nursing staff soon realised he'd forgotten to take his increased steroids, so he has to return on Friday.

I'm so mad at him, how he's not taking things seriously/responsibility for himself. I haven't said anything, I just can't. His focus is still very much on work, I have to respect his actions and decisions, but goodness me, these things just don't matter in the same way.

Also, he had a letter from the consultant today, with a summary of his situation. OH doesn't want to read any of it, know anything about it.

This time, my nerves were not so shredded and I was able to read some of the diagnosis. I wish I hadn't, I saw the Gleason is 9. I can' take this in, it either says 5+4, or 4+5. I don't know if one way or the other is better, I daren't google. 

What does anyone think? I'm at rockbottom, so frightened. 

Thankyou xx

Awe Jess40 , I can’t explain the Gleason well so will leave it to someone who can . Sorry you’re feeling so despondent but you need to look after yourself too. 

My OH was getting “confused” or in fact  disgruntled with his meds as he’s never been one to take even paracetamol  . So I have taken over .

when we get his prescription. I cut them into 7 day strips as some are 7 , 10  14 . So I can keep tabs. 

His Abiraterone is put at the side of his bed with glass of water . He is taking it at 5 am as he is normally up for a pee. This allows him to have a banana & tea  at 7 before he goes his daily walk . 

I leave his steroid plus his other three meds in their packages  on top of the airfryer which he takes when he comes in before breakfast.

it’s a faf but the routine is working and I know he’s getting them . 

some would say I’m mad but to make sure. It’s worth it  

huge hugs & keep in touch 

Liz & OH xxx

Thankyou Liz and especially for the hugs.

He has one of those tablet cases with compartments for each day. He'd just forgotten to add the three extra days of steroid for before during and after the chemotherapy infusion as he'd only had it once so far, 3 weeks ago, easy done, I supoose.

He was the most understanding, gentle and kind of men, now he's so short with everyone, I can't say anything without a negative reaction or a contradiction. So much has changed since the diagnosis and now the hormone therapy.

He can be uncooperative one minute, tearful the next, we are all suffering. 

Thanks for your reply.

I get it Jess40 , 

As many of this group will tell you it’s a couples condition and bye gum it sure is . 

we just don’t support we are living through it too. 

for  his symptoms he is hormonal and frightened. So the combination is doubly hard . keep in touch 

Liz & OH xx

It most certainly is a couples disease and it’s heartbreaking. This wonderful group has helped over the past 6 weeks and I can’t thank you all enough. I’ve been in touch with Maggie’s today and we’ve booked a session next Tuesday in the hope we can salvage this marriage which means the world to us both. I’ve also taken up a complaint with the surgeon today I only wish we’d joined this group before decisions were made

Hello Jess (Jess40) 

I am so sorry to read about the issues your husband is having - he's a typical man - we are all proud and stubborn too - just ask my wife - but in the end she sorted me out and I wouldn't be where I am today without her.

So try to tell your husband he's "treatable" but he needs to help you with his treatment  A Gleason 9 (5+4 or 4+5) is an aggressive cancer - I am a Gleason 9 BUT the Hormone Therapy has put the cancer to sleep. Now it's sleeping the chemotherapy is there to kill it off.

If you tell him that - and that life is more important than work - he may just come round to your way of thinking.

If I can do anything for you (happy to have a chat with him if it would help) just let me know.

Best wishes - Brian.

Thankyou Brian, Dobbie and Liz.

Update so far, OH had his 2nd infusion of Docetaxel on Friday, he seemed much better with it, had two nice male nurses who chatted with him and kept him calm, and left there feeling quite chipper. 

Yesterday was pretty normal, ate well, protein ++ and he's been drinking the lemon barley quite frequently, cut out tea and coffee completely.

Expecting the 'low' to hit sometime today, hopefully not as bad as the first time, if it does, it could be the last - his consultant wanted him to stay on this dosage as long as possible. The senior nurse on the CU thought the dosage too high for OH to cope with, thought it should be changed. He has a phone meeting with them in a couple of weeks to discuss the way forward.

That's it for now, 

Everyone's kindness on here means such a lot.

Hello Jess40 . My husband reacted badly to the first cycle so they reduced the dosage of Docetaxel for subsequent cycles and gave him more supportive treatment which meant that he coped well for the duration of the rest of the treatment. Things like the rate at which it is infused can make a difference to the experience. Drinking plenty can help flush the drug out of the system so I am glad that you have found things he will take in. Fingers crossed that it doesn't hit your husband so hard this time but let us know how it goes. How are you coping now - make sure you take time out to do the things that you enjoy. Big hugs.

Hi Jess40 fingers crossed that this round is better.  I do hope that your OH is able to look at this treatment objectively and realises that even going through a bad reaction for a few days is way better than the alternative!  Keeping fluids going will no doubt help.  If he needs a day in bed, then fine but anything longer is probably not helpful and I think he will recover better getting up and moving around.  Keep us posted.  David

HiJess40 

thank you for the update. So things are moving along nicely without too many side effects . You can also get different flavours from pear to summer fruits . So he can alternate. 

best wishes & hugs 

Liz & OH xx