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

Message withdrawn

Message withdrawn

Message withdrawn

oh oj

i found end of transplant thing hard, as felt we had lost our support system a bit.

i hope the next scan shows some shrinkage.

i think its the helplessness and the waiting coupled with less support from the medics.
i can't plan stuff to far in advance as steve is so up and down and sleeps a lot.
he gets very down when we have to cancel stuff, there are a few plans in my head but i will keep them there for now.

Really sorry OJ - it all sounds so horrendous and cruel.

Not surprised you don't feel happy - there doesn't seem to be a lot to be happy about.

Oh, OJ, I think you've identified why you feel this way very clearly. At the moment, even with all the physical wretchedness the treatment brings, something's being done. When it stops, you return home alone, without the other patients and staff at the hospital, and wait
My heart goes out to you both, it really does XXX
Agree that asking the Macmillan nurse for tips on coping with the wait is a great idea

oh dear - it is reassuring when you have a routine and on tap advice from the doctors and nurses

waiting is never easy

Macmillan nurses should be able to advise or signpost you to other organisations who may be able to offer practical/emotional advice for this time
x

i suppose its just another adjustment, it seemed like a huge adjustment when he started the treatment and something to focus on too
it's mad really once the daily trips are done with our life should seem more "normal" our normal keeps on changing thou and each new phase has to be adjusted too i guess it just takes time.
thanks for leeting me ramble and taking the time to post MN is my ranting sounding board

i see what you mean, i think every part of this journey is going to be emotional and bloody difficult for you all to face. you are doing so so well OJ be proud of yourself you are facing things that most people would never have to even think about. and you are still smiling and helping others too,

Nothing much to add OJ just popping by to see how your coping and as usual you are doing a fantastic job.

Looking after his health and his spirits will be a full time job I'm sure. You sound like you are doing great.

Oj, you are a wonderful woman, thats all, you know who i am and i want you to know that. There is very little else i can say as i have never had to find the inner strength that you have had to, so i have no suggestions or helpful things to say but i really admire you and so do so many others here
Hope you both make it to christy

oj, I so hope it turns out that the swelling caused by the radio will go down once the treatment has stopped, and it will have shrunk the tumour enough for you all to have some good times without medical intervention for a while.

(((hugs, flower)))

You are so brave in all this it makes me want to weep

i will look after his Health but the spirts are all mine
i feel anything but brave and strong am just muddling throu each day and loving steve as much as i can whilst i can.

OJ, you are wonderful.

i think that's the only thing you can do OJ - take it one day at a time. Rant away - so hard for you all {{{{{{hugs}}}}}

Hi Oj,
Such a tough time, how are your children coping? We all send you lots of love and keep you in our thoughts, xxx

The kids are ok they still don't understand what is happeningm i have a meeting with their school on wednesday to see if they have any resources that are autism friendly that deal with dying, i think i will need tissues for that.
we have to see the consultant tomorrow the one who dropped steves steroids last week and is planning to drop them again this week, wonder what she will say when we tell her that we have upped the steroids as steve went downhill on the lower dose, i will take hardhats with us.
our lovely mac nurse is on holiday until the 15th and i miss being able to talk to her as she is the only person who i can freely talk to and who knows her stuff.

is there any chance you can speak to the consultant without Steve in the room at all, just that I imagine it will be easier for you to speak openly to her about the risk/benefits of the high dose of steroids without Steve around?

gonna get steve to sit down with me in the morning and write about how bad he was on the lower dose, mind you he is not much better on the higher dose so dunno what they will do with him.
steve wouldn't want me to see the dr on my own as he things we are keeping things from him.

but you are both brave and wonderful.
good luck with your Dr meeting today and your school meeting too.

Good luck with the consultant OJ when all said and done she hasn't seen Steve at his worst on the low dose so you know what you are talking about just be strong as per usual.
Also massive hugs for the meeting tom at school, can't even begin to imagine how hard that is going to be, my thoughts will be with you.
Do the Mc nurses not have holiday cover or do you just prefer to talk to your designated one ?

well we saw the consultant today (the top bloke) he wants us to reduce the steroids slowly over the next three weeks,but if steve gets worse we can step back up again. he said it will be disappointing if the steroids can't be reduced as that would indicate the the radiotherapy hasn't done the job.
steve is to have a scan in three weeks and go back for the results on 11th dec if the doctor thinks the benefits out weight the treatment he will start on the much higher dose of chemo for five days a month.
the good news is that he would do the chemo from the 11th so he won't have to do chemo over christmas

Glad things went well today OJ - sounds like the consultant is definitely on your side! Here's to a chemo-free christmas