Hit an emotional walk today

And that should have said an emotional wall. Damn it....

Oh darling, I really understand that feeling and here’s the biggest one I can manage hhhhhhuuuuugggggg. X

Somehow, seeing it in black and white, makes it real. It takes us out of our let’s pretend everything’s normal mode, which I’m sure most of us live in. Your 46, I’m 69, I’m old enough to be your mum, so it’s a very maternal hug but sadly it won’t make it better. Try not to think of the future. As Court once told me, keep your mind where your body is, well try really hard, it’s not that easy.

Today we drove into Teignmouth, he wanted to drive but on way back he sneezed and his nose just poured with blood, he pulled over, I took over driving and it bled all the way home (15mins) He talks constantly of getting well and how he can’t wait to play golf, I never know what to say. I need lessons in what to say.

Tomorrow we’re seeing a lung oncologist not his normal colorectal, we never got the phone call from him,  so I’m expecting the worse. Husband actually said yesterday he hadn’t got cancer in his lung or liver, but then he says he doesn’t care.

It’s all so hard.....much love Budge ..

Hi Budge,

Thanks so much for that maternal hug x

I will be thinking of you while you’re waiting for your call today, if you’re up to it please let me know how the call goes, good (hopefully) or bad. They’re the worst bits. We have a call next Friday to find out if my hubby can have immunotherapy. 
You’re so right though about us living in this ‘pretend’ world almost. We’re in a bubble most of the time just trying to take one day at a time like everything is normal, and basically trying to avoid anything sharp to prick and burst that bubble!

Stay strong, easier said than done I know x

Hi, we’re home and we saw his normal oncologist.

Basically it was a mixed bag. We found out it is in both lungs, the liver, and he also has an enlarged lymph node in his chest, which we didn’t know about. Some of the mets are slightly smaller, some are larger and the lymph node hasn’t changed. They plan on giving him another 3 fortnightly cycles before another scan. Basically all that’s left to try is the Oxaliplation, which he had a reaction to last time, so it was stopped. 

My husband as usual just carried on talking about wanting to play golf, even though all golf clubs are closed, he spends so much time sleeping, particularly after treatment. Oncologist  said he could book for a port to be put in but it would put treatment off for a month. It was me yet again having to point out that wasn’t perhaps the best plan. I guess I expected oncologist would be more influential, to advise what he thought was the best plan but no he just agreed with me after I spoke.

Husband still talks about wanting to have a break from treatment and get to back to normal, again I have no idea what to say to him. I know it’s just a matter of time. 

I continue to be strong, actually I think I’m starting to be resigned to what is coming, I’ll just do my best, as will you to get through all this. Remember, you’re not alone, I’ll be here to support you along with all the other members of this bloody club.

Actually, with all the nose bleeds my husband is having, he’ll probably bleed to death first. 

Take care, stay strong.....Budge xx

p.s. If I can work out how to add you as a friend, I will x

My husband too says things about getting better. I find it so hard that we have to pretend it’s all going to be ok. I got so fed up with it last week and we did talk about things a bit more realistically and I asked him if we could do the advance care plan together that the hospice gave us ( a year ago and this us second copy as he “lost” the first one). I know if I dont bring it up and actually come armed with a pen , it won’t get done. I want to know his wishes. But I feel bad for making him come out of the place he is most comfortable, but his illness is both of our journeys and I don’t want him to deteriorate quickly and us not to have these important conversations. 

I hope your hubby’s nose bleeds stop. My hubby can’t drive now as he is not safe ( slow reactions and sleepy). I had to get dr to tell him he wasn’t allowed as he was getting do cross with me telling him he shouldn’t. Now I have to put up with him criticising my driving ! The steroids make him very antsy and critical. 

xxxx

Budge thats good in that at least they’re talking about treatment still, I dread the day when they say there is nothing else they can do. And you have humour in the situation which is so important. Let’s hope the next few cycles have some kind of impact, there’s always hope with each new day.

Olive tree that’s so brave of you to have those conversations. My husband is very poorly but we’re nowhere near that discussion, part of me thinks we never will be. I have to respect that and just hope that as he gets worse I can get the help I need at the time. He still talks about the future but like you Budge I think I’m now resigned to a future without him, not that we talk that way. In front of his kids we also talk far more positive, I think that’s important for them.

God I totally get the driving thing, I do all the driving now as my hubby is too weak but I can hear the comments under his breath each time I brake just a bit too hard or go over a pot hole ‘incorrectly’. Aaargh!

 Xx

Budge I’ve sent you a friend request!

I know bramblejoo, thank you, 

I don’t plan on discussing hubby’s final wishes any time soon. To be honest after knowing him 47 years and having talked about it prior to him getting sick, I know he wants a simple cardboard box to be in a beautiful a place as I can find, and also some of the loudest music I can find. If I was to mention hospices or anything remotely connected to his long or short term care, he’d not be a happy bunny, so I won’t, I’ll just feel my way as and when I need to.

Oliver tree, your a braver woman than me, I can pretty much guarantee the response I’d get from my husband and he is quite Arsey when I say anything he doesn’t want to hear and yes, those steroids have a lot to answer for.

bramblejoo, it’s important that the kids have hope, I think you said they were only 20 or 22, it’ll be hard enough for them in the future, but you know your children. My daughter is 40 and so we can talk openly and honestly but she still struggles.

What is it about men and driving, I think when his nose was bleeding was the first time I didn’t get criticised, he was too busy with his bloody nose, it happened again this afternoon, keeps blowing it too hard, nightmare.

Tonight he asked me if we’d make out 50 years anniversary in 5 years time, I said I didn’t think so.

After all that.....
For your hopeful amusement, I’ve always historically requested, my ashes are put into a rocket (firework not space) and sent up into the night sky, probably to Loveshack but I do love a bit of Joni. I want everyone to remember me as being a bit crackers and to leave a bemused smile on their faces.

Take care, stay strong......budge x