it is Steves last week of radiotherapy & chemo, so why can't i feel happy about it?

[onlyjoking9329]

it is the last week of steves treatment and we are having mixed feelings about it, a lot of people have said i bet you will be glad once treatment has finished and at the begining of the 6 weeks i thought that would be true.
however now the end of treatment is close i am now worrying and this might sound odd.
whilst i can take steve to hospital everyday ( i feel that i am doing something)
we have the nurses and drs around to deal with any problems and stuff.
we have other people at hospital fighting the same stuff we will miss them.
at the moment we feel proactive as we are actively doing the treatment once this is finished then the tumour will just continue to grow unchecked and there is nothing we can do about it.
we will have to wait 4 weeks after the end of treatment to see if tumour has shrunk or stayed the same, we don't get another shot at the treatment so it needs to have worked in order to buy steve more time.
after the scan we wait 2 weeks for the results depending on the results steve may get more chemo 1 week in 4 this will take place around christmas

i get ots of time to myself in the evenings like now when all are in bed but i don't ever get the house to myself.

Hi OJ - hows things? Did Steve get to go out today? xx

Steve had a rough night and still not very good this morning...but he did get to go out for a couple of hours with his brother, he has been in bed ever since. hoping he has a better night tonight.

OJ, just wanted to say you and Steve are in my thoughts a lot. I haven't been on MN a lot recently but I'm glad I found this thread to find out how you're doing. I started a cancer support thread, by the way. Don't know if you're interested in adding to it but it's there if you want to (I'd add a link to it but haven't figured out how to do that!).

Hi OJ,
So glad Steve made it out, even for a couple of hours, wishing you all a peaceful night, xxx

hope steve has a better night tonight. xx

he has less pain today which is good he has slept for most of the day.
will be talking to the doctor tomorrow about pain relief

How are you today O.J?

Hi OJ has the radio finished now ?
Sorry to hear Steve hasn't had a great weekend hopefully if he can rest today tom might be better.
I thought of you the other night when that programme came on. I only saw the first few min and even now with my mum 6 years on it's still too raw so have no idea how you managed to watch any of it.

yes his radip has finished and he won't get anymore now.
he has rested most of today tomorrow our three have an inset day so it will be busy here.
i only managed a bit of the programme but have recorded it to watch at some point.
Steve is really down at the moment and the Mac nurse did say that this would happen once treatment ended.

i don't think it is selfish for you to want to spare yourself and your kids i would think that is just the mother instinct in you.
Glad that steve has finished his treatment but i understand that now you have less to focus on as you are not activley doing the treatment, so now comes the sitting and waiting, do you think you and steve could maybe get away for a few days or is that not possible?
i hope tomorrow is a better day.
how is Steve tonight?
how are you coping with Steve and the kids? it must be hard work for you.

xxx and hugs to you and Steve

Hi OJ ... annoyingly i can't find the website DH was looking at ... he was trying to find side effects of the temozolomide and tegretol which is his anti-seizure meds and he found it on there. Will ask him. Did a quick google though and found this ... surgery removed most of his grade 4 tumour but a tiny bit was left ... he had temozolomide as a clinical trial and that was more than 10 years ago ...

thinking of you x

survivor

it has felt like a long weekend the kids had an inset day today.
steve still sleeping a lot. i have to speak to the doctor tomorrow about his pain relief as it isn't working to well at the moment.
WC that was interesting reading he was lucky that they were able to remove most of the tumour, i have read of people having a chemo wafer put into the brain tumour but they have to do it when they do the debulking and so won't do it for steve.
i read today that our PCT will only fund 6 months of the chemo so not sure what happens then.

hope the kids haven't been driving you mad being off school today OJ. Hope the doctor is helpful tomorrow.

oj we're lucky I have private medical insurance from work. If not, our PCT wouldn't have funded the chemo at all. They will now, but not when we needed it. Talk to the consultant about the funding and the 6 months only ... the tumour might've responded really well to the treatment and only 6 months needed at this stage. How's he doing with the steroids? DH found it hard to reduce them. And did his hair fall out from the radiotherapy? Sorry if you mentioned it on another thread. Find it hard to keep on top of mn as well as rl.

Hope you manage to get a bit of rest today OJ and you get his pain relief sorted. Is the mC nurse back yet ? Maybe worth speaking to her r/e funding of chemo ?

How are you?
did you get anywhere with the doctor?

Sending you lots of love OJ XXX

he has a few patches of hair loss/beard loss
he is on 6mg a day steroids at the moment but has had a rough night/day so i have been onto the GP to sort out better pain relief so have sorted that out now.
got the date throu for brain scan 5th dec, results on 11th

Brave lady, xx

{{{{{}}}}}}

OJ - I often write a post, delete, re write then delete again as I know what I want to say but it never comes out right. So I'll keep it simple. You always move me so much, I think you are so brave and strong and I wish so much that you were not going through this pain...sending you love and prayers xxx

thanks for your kind words.
we are just doing what we have to do and i am sure you would all be just as strong if in the same situation.
Had a meeting today (cancelled from last week) with the SALT from the kids school.
it was a F*ing tough meeting, the idea was to talk about how to explain things to the kids in a way that they would understand, DS can ask questions about things whereas DD's will have stuff in there heads but are not able to ask questions or understand the answers.
the SALT seemed to go round the houses somewhat and carefully managed to avoid using any words like Cancer, dying, death.
i don't know if she thought she was protecting my feelings or if she didn't feel comfy with the subject matter.
so i felt very much that i had to spare her feelings if that makes any sense, and i am not sure it does.
why is this all to difficult?
why can't things be different?
why can't i keep my lovely Steve forever?
Why should the kids lose their Dad?

OJ {{{{Hugs}}}}}.Sounds like a VERY tough day.xxxx