Scared and worried

Hi Ballet 

Hopefully the doctors will have given him the information leaflets for the drugs, if not you can read them on our main site 

it is perhaps worth noting nobody really knows which side effects apply to who and people rarely get them all and most of them can be dealt with. When my wife was treated she did have a couple of times where she became a bit feverish and so was admitted for intravenous anti biotic treatment and that was sorted.

If we look at  Your feelings when someone has cancer we can see how common your feelings are though.and sometimes it can help just to recognize that you are just coping as best we can in a next to impossible situation.

Do come here whenever though - we understand because we have all been there.

<<hugs>>

Steve

Hi Ballet,
You should have had leaflets and booklets relating to your husband’s particular cancer and a copy of the consultant’s letter giving an outline of treatment.  He should also have been assigned a Macmillan Nurse or nursing team who are generally available for any questions or worries you may have.  My husband has always had a call back from whichever department or team when he has needed to chat about something.  Have a look around your hospital and see if they have any other places you can drop in to.  Counselling, a chapel, tea room, etc.  I found the climbing walls with anxiety was lessened when 1) treatment started and 2) I found this website.  You will settle into it.

But my main message is, if you have any worries or questions, get in touch with the team who is looking after your husband. 

It’s a tough road.  Big hugs.

Hi Aotearoa

Thank you for replying, it's just such a worry, he was on  a different chemo treatment for 2 weeks, this is now his 2nd week, from 9th Feb he will be on Folfox and Panitumumab via a pic line as there are now 4 spots on his liver originally there was only 1, for 12 cycles after 6 cycles he will have a scan, also there is something showing on his neck that is not anything to do with his bowel cancer, so we have a trip to the ENT on the 7th Feb to investigate that !  It just seems you get your head round one thing then get hit with something else, my husband doesn't ask questions just takes what they tell him to do, where as I want to ask questions but I don't feel it's my place to, as he says to me he's the one with cancer. If I say why don't you ask about certain things he tells me to shut up and stop going on about it, sorry about the rant it just seems like bad news all the time !!

Thank you Steve much appreciated !

Hi Ballet,

Gently remind him that you are a team.  Yes, he’s the one with the cancer, but you are his back up, his support and his coach.  There is the fear factor, but you are the one who is dealing with this too and if you are to help him through this, there are things you need to know at times. Some questions may sound dumb or obvious, but if you don’t ask, you’ll wish you had. I think it’s a “man” thing, this not really wanting to know too many details or asking questions.  My husband was much the same, but didn’t stress about me asking stuff.  I also recorded quite a few meetings on my phone – simply because it’s easy to forget something or that I would remember it one way and he would remember another. 

Just a note re appointments.  My husband emphasised to all departments that he could be there within the hour if they had any cancellations – didn’t matter what it was for, if they had a cancellation, he could fill it.  It’s surprising how many people do cancel appointments or get put off.  He phoned about a scan one morning, was given a date about two weeks ahead, he asked if they had anything sooner, the guy said “Umm, can you come in at midday today…?”  You bet!  He had three or four brought forward in that way.  There is only so much the hospital team can do for their part – your husband has to do his part and be pro-active in his treatment.  You, as his best support, can then do yours.  There is nothing wrong with asking questions when you feel you need to.

It certainly sounds like you are going through the mill. Big hugs.

Thank you so much for the advice, we did have a bit of a heated discussion last night, today things seem more on track,  do you find you have good days and then bad ones full of worry ? I think it's the not knowing that gets me more than anything.

I hope your husband is doing okay !

Thank you & big hugs to you too x

Yes, good days and bad days.  That’s inevitable when you are dealing with life and death situations, with decision making, with someone in pain or sick with worry – it can be highly charged at times.  You will get the flak and you have to be prepared to take it and he has to be prepared to apologise.  That may well have to work both ways.  Do take time out for yourself, even a walk can be enough to regroup your emotions.

As for us, we are coming out the other side, albeit slowly. It is tough. Especially when you keep getting stuff thrown at you from the sidelines.

Hope you can find some worry-free time this weekend.  xxx