Friday feelings

Hi Claire,  I've read a couple of your blogs today (catching up) and you sounded so low I wanted to reply, just to let you know that someone's listening!

I know that weekend feeling can be scary, things always seem to happen at weekends, don't they?

But try not to worry too much, if Toni took a turn for the worse just ring hospice, hospital, anyone, and insist that he's seen.It must be so bloody frightening for you - I wish there was something I could do. I'll be looking out for your posts. Lots of love Jeanie x

Thinking of you both and sending hugs....love carol x

Hi Claire

Know exactly how you feel as I am in the same position. every little niggle seems so much worse at the weekend.

Toni sounds much like Bert in as much as he keeps saying everything is fine and he will get better. He knows he won't but that doesn't matter.

Thinking of you both

Love Teri

Hi Claire

I so know what you are going through.  Rang our Mac Nurse this week and she rang back.  She has been away for three weeks on holiday in NZ.  She said we should be going to the GP for stronger pain killers, not bothering the Onc.  So I followed instructions and did just that.....what a waste of time that was.  The Doc wanted to know what Peter thought he wanted?  She begrudgingly examined his tummy, said there was a swelling and asked how bad the pain was.  Wrote out a prescription for Co-Codramol and while waiting for it to print out....said absolutely nothing.  Handed it to him and said (more or less) don't come back to me go to your Onc.

The Mac Nurse didn't phone back yesterday as she planned to do.  I started giving him the new tablets when we got home and he cheared up no end, pain went he looked really quite well.  By 9.00 last night he had started being sick and stayed in bed till 2.00 this afternoon.  Mac Nurse rang and I told her that he had been like this in hospital and that I had stopped him taking these tablets cos the instructions said it can cause vomitting.  She agreed.  So now she is going to phone tomorrow and assess the situation.

So yes, I understand exactly how you are feeling.  She is going to go over everything with me when she calls in, regarding the pain etc and what to expect next.  We are not qualified at this and are given no training as a carers, it is so scarey.

Same as Toni, Peter doesn't want to talk about the what if and I must admit I don't want him to think I am thinking negative thoughts otherwise he would probably go to pieces.  In one respect I wish I had the courage to phone the Onc and ask if he will tell me a time scale, I think I might cope better, but that is the way I handle things, not all of us are the same.  I want to prepare my girls for what is going to happen, I don't want it to be too late for them to spend some extra time with their Dad.....oh!  I just don't know what to do?

Hi Teri, I keep forgetting that it is not just me, there are so many of us in this awful position.  I'm so sorry for all of us.  

Hi Carol, hope you have a lovely birthday.  Jeanie, if it wasn't for our listeners and your messages I don't know how we would cope.  Thanks.

Cherryl xx

Thanks all for your supportive comments. You make me realise I am not alone in this.

Carol - hope your birthday was an enjoyable day.

Cherryl - what a terrible time you've been having. I rage against so called 'healthcare professionals' all the time. Our GP is fairly supportive but has no real experience of dealing with a terminally ill patient with all Toni's added problems. Where I feel we are so lucky is the support from the Palliative Care consultant and the hospice team. I rang the nurse yesterday and left a message about Toni's groin and within an hour she'd rung back with a plan. And it's like this all the time. There are so many alternative painkillers available and they tailor them to the pain he has- so he has Buscopan for the colicky griping pain, amiltyptyline for the recatl pain, paracetamol for the leg pain and of course his morphine - both background MST and oramorph for breakthrough pain.

Do you have a PC team at your local hospital? I know that having one is very much down to individual trusts. The onc referred us to the consultant when he told Toni there was no more he could do for him and she has made such a difference to his quality of life.

Timescales are tricky and in some respects I feel the same but then I think they can only guess. Toni was told on 3rd November he'd be lucky to have months left and probably had only weeks but his remarkable will is keeping him going so who knows? I don't think the doctor who told him initially had a clue. When we asked the onc he said 'I can't give you a timescale - just go and enjoy your time with your wife'. So it's a difficult one. What I am astounded and angry about is the lack of care Peter seems to be getting and even the Mac nurse going away without leaving you an alternative. Again the pc team are great for this, when ours is away she gives me alternative names to ring so I'm not left alone. It is so important to have that person at the end of the phone otherwise you're so isolated and makes the situation ten times worse.

It's a dreadful situation and how right you are. What training have we had for this role? See if you can get a plan of what to do and who to contact in these situations. Also have you got a local hospice? Could you be referred there? They do pain management and would be far more responsive than the doc.

Oh it's all so awful for us and them.

Teri - thanks for your kind words and I'm so sorry things are tough for you too. You are right -  he knows he won't get better but it doesn't matter. The belief and will is such a positive force.

Jeanie - thanks for your words of support too. Its nice to know my ramblings are read and people genuinely care. What a dreadful club we all belong to. And thanks for such sensible advice too. I know my panicking is irrational and after reading Cherryl's nightmare I am resolving to be far more sensible and realistic.

Love to all of you