Hi Persiepops. 

I noticed that you hadn't had any replies to your post here although I know you've been chatting with Rainbow28 on another thread. 

It's sounds a really difficult time for you all with Dad going through his radiotherapy and of course you being so far from home as well. Understandable that Dad is confused about what is happening. 

Although I know it's much easier said than done, try to help Mum take each day as it comes and not look too far ahead into the future as this will likely cause more anxiety. Hopefully on the days when Dad is feeling a little better they are able to share some sense of normality. 

Sending you all our best wishes. 

Jenn
Cancer Chat moderator

Hi Persiepops, 

My boyfriend has the same problem. He has brain cancer, had surgery, radiation, and chemo.   Steven says that he feels like his brain doesn't work right anymore, and he has forgotten how to do some tasks, but if you spoke to him you wouldn't know anything is wrong.

I just gently correct him when it matters, I let it go when it doesn't.   As radiation causes some changes in the brain I like to think of these blimps as temporary.   If there is something that he keeps forgetting, like the name of his new nurse we write it down in a notebook he keeps.  

In my book there isn't much to get upset by forgetfulness when their brains are getting worked over so much.   I would make sure i mention it to the dr and also talk about medications that might be making him get a little fuzzy.   When Steven is on his pain medicine (patches) the dose isn't always steady and when he seems to get a bit more his memory gets worse.  (short term memory that is).

Hope this helps and I hope it smoothes out for your mom.

Kind regards

Rebecca 

Hi, thank you for taking the time to reply. Things are deteriorating quite quickly with dad. He’s now very physically weak and we are struggling to keep on top of caring for him. We’ve requested some nursing help at home but it’s slow to be arranged. Mum is really struggling and although I’m staying with them full time at mo and doing everything I can, the emotional and physical stress is very difficult for her. The biggest challenge is taking dad to toilet, he wants to go to bathroom and is often making a mess as he doesn’t always get there in time but won’t entertain using a bottle or incontinence pants. I don’t really know how to handle this period when dad thinks he’s ok and wants to do things but is so clearly not able to.

Hi Persiepos,

Just checking in to see how you are doing.   I'm having a "one star day" (which is pretty ***) and needed to be here I guess.  Sometimes you just get so overhwhelmed.  It sucks.  And I totally hear you on the toilet issues.   Steven had an accident the other night too.  I think it is just one of those things.   We had some bad news and his tumor has grown so starting Friday we are starting new medication Avastin? and a different chemo pill Lomestine?     Is your dad still getting treatment? 

I hope you are ok.

Rebecca.

Hi Rebecca, 

thank you for your message. I’m sorry you’re having such a bad day. Unfortunately my lovely dad died at the beginning of April. I was and am devastated. I still can’t believe I’m not going to see him again. I am so angry that MY dad has died. He was so strong and fit, had a great life and should have lived for loads more years. I’ve been cheated out of that time with him. 

I’m sorry to hear that Steven’s tumour is getting bigger, fingers crossed the new treatment starts to reduce it. Any time you want to chat I’m here. Xx

I am so sorry for your loss.  Steven is being cheated too.  He just turned 48.  Before he got sick last August he was 100% healthy, hiking, fishing, golfing... now just walking the dog around the block is an amazingly good day.  :(

I totally get your anger as I get incredibly angry as well that is it is 2019 and that they don't have a cure.  Makes me crazy.  Steven wants to have a giant family picnic in July and last night he is like make sure that they all come, i don't think I will be here next summer.  I pretty much lost my mind and said don't talk like that!!!!  And he was like I want to talk like that.  I need to keep it real with you.   Oh, my heart broke.   Deep breaths are pretty much the only thing keeping me on the ledge.  I have no idea how so many people deal with this without completely going insane.     

Anyway, I am trying to make the best of the time we have left. I am trying to get him to go for a nice easy pony ride this weekend.  (it is belmont stakes horse race this weekend and our friends are having a ridiculous party with the big hats and pony rides and horse betting) I am hoping he feels well enough to attend.

thanks for your kind words.  

Rebecca.

Hi perseipops

Have you thought about a commode you can get some nice wood ones that look like an ordinary chair, I've got a disabled wife and I've got one beside the bed and one beside her main chair i have to lift her from one to the other, it saves a lot of accidents. Best wishes. 

Billy 

Hello I just wanted to reach out as I am in a very similar place right now.  My husband was diagnosed with a grade 4 brain tumor in March this year, since then we have gone through brain surgery and 30 sessions of radiotherapy alongside chemo.  We are on a four week break until we move onto 6 months of chemo, 5 days per month. He has resigned himself to the fact that he may not be here next summer, I am struggling to accept that as we have two children and previous to this he was so fit and well. It is really hard I have decided to take some counselling to help me cope, and wanted to mention this to you , your local Macmillan or hospice should offer this xxx

Hi HMS,

Thanks for the suggestion.  I am in the US so i don't have Macmilan, but we do have pallative care program that he is enrolled in.  Hospice here doesn't start until he says no more treatment.  The pallative care team has been very kind to me, but right now I want them focussing on him. I'm "fine".  (yeah right...)   

At this point I am still firmly in camp we are going to beat this and he is starting new treatment tomorrow Avastin and Lomustine.  And I am like there is no reason why you won't be lucky and have this work really really well!  Gp Team Steve!

See the problem I have in my head is that even though i know he has a terminal cancer I can't believe it.  I start to wrap my head around the idea of stopping treatment and having a better quality of life and him dying I get close to processing those thoughts than WHAM!  giant freak out and being scared out of my mind and wicked upset. 

Then i say calm down.   Just be calm.  Breath.  Nobody gets any promises on how long they are going to live.  You wake up today?  Congrats you have that.   You don't know if you will get hit by a bus or have a heart attack or what. Just focus on today.  and that little mantra gets me mostly back on track.  mostly.  But i don't know if it is a good thing or not.  I know it is a coping method and mostly true, but i think it is also avoidance of dealing with the unfair hand he (we) has been dealt. 

You have to wonder if wasting all this energy freaking out is worth it.  Is it worth me being a basket case in the short time he has left?  Probably not.  And is it OK if i don't process any of this now and focus on him and then i fall completely apart when he dies?  Maybe,  my father has already said he is shipping me off to distant relatives when this is all over so I can recoup. (I work full time, commute 2 hours a day, and am the full time caregiver to Steven so I am getting crispy with no sign of things calming down in fact I imagine them to ramp up as Steven gets sicker)  Or should i really push myself to get acceptance now and that way I am more at peace with whatever decisions he makes and however this comes to a close.

Everythng just feels exhausting and hard. Big sigh... 

Sorry for the rant.  It kinda just popped out.   

Thanks for your kind advice.

Rebecca.

Rant away it will do you good, I am also working but have managed to reduce my hours.  We have two children as well so I have no choice but to paste in a smile and get on with things.  Trust me though u need support as well, a safe space to cry and rant and let it all out.  I am doing the 'i am fine' constantly but I am not.  Take care of yourself and cherish some quality time hugs H xxx