We Have Support

[Ellie]

Hi everyone

I have changed to a new topic as I want to be positive and "More bad news" was a negative title, so here I am updating from last week when Brian was in the hospice.

Brian came home on Monday and his pain has been much better since his stay. Taking steroids, plus increasing his patches to 250mg, seems to have done the trick, although he is still using OxyNorm morning and evenings, when the pain is there again. The hospice gave us a discharge pack, which had a contact number, all Brian's history written down, and some stronger liquid Oxynorm which can be used in a syringe if ever we have to get a doctor in during the night because of serious pain. Just having that contact number made me feel so much better! I now know that if I need to, I can contact the hospice during the day, or ring the given number out of hours and someone will treat us as a priority case.

The day after he was discharged, our district nurses rang and then came round to check the drugs and syringes which had been given to us. They, too, said we must ring them if ever we have a query or a problem and could also call in once a week, or once a fortnight, if we would like that. That, again, made me feel so much better. I never want to make a fuss and sometimes have waited before asking for help, but I know now I shouldn't - and won't - do that again. When Brian refused any further chemo, it seemed we were left in a bit of a void. We weren't in the system to be called in to see a specialist every few months. Brian only saw a doctor at the day-care and our loal GP's - as good as they are - are not really specialists in his cancer. I was never sure who we were being looked after, so knowing the hospice and the district nurses are there, between then 24 hours a day, is a huge relief. I probably should have know the district nurses would come out if we asked them, but having everyone confirm and emphasise they are here for us means such a lot.

As it turned out, we needed the nurses the very next day! Whilst in the hospice, we hadn't realised that Brian was only being given the normal strength Co-danthramer (in tablet form). On top of having extra patches, he had become very constipated and nothing was working. That was making Brian feel sick and stopping him eating, so we needed something doing. The nurses have now been twice to give enaema's, which seem to have done the trick. His stomach is very churned up tonight, but I'm hoping that by tomorrow his pain will be ok, plus his stomach, and if the radiotherapy starts to kick in, then we may be able to plan a short break in a week or two.

Best wishes to you all

Ellie

xx

[Nardobd]

So very pleased to hear that you feel more supported now Ellie. Let's hope the treatment did the trick!

Don't forget we're here if you need us.

Love

Nicki xx

[Ellie]

Well, I changed the "More Bad news" heading too soon, Nicki. On Friday, our GP rang Brian and told him something had shown up in his blood test from Thursday.

She thinks "something else" is going on, but not to worry until he has another blood test next week!!! What?? She expects us to get that news and no think about it

all weekend? We were just planning to go away with friends and will now have to leave it until we know more. I just can't stand no knowing what is wrong! Once I

know, I can deal with it, but it's the not knowing which has always got to me.

Poor Brian was so down - he's had enough already and just doesn't want any more hassle. I am frustrated it is a weekend and I can't get any more info. Does anyone know anything about secondary bone cancer? What could his blood test show is wrong? Just wondering if it is to do with calcium leaking into his blood. I am going to go round in circles trying to guess but won't know anything until probably Tuesday next week.

Just when we thought things had settled down for a while.....

Ellie

x

[Nardobd]

Oh Ellie I'm so very sorry to hear that. I have to say that I'm very frustrated with your GP - if only medics thought before they spoke! If she said what she suspected was wrong, you would be far more settled, I'm sure. I appreciate that this isn't necessarily the best course of action in all circumstances but given the situation I'm surprised she left you both hanging like that.

However, I suspect if the blood test results were specifically cancer-related she would be referring Brian back to the hospice, not repeating the test. It may just be something very simple, like a little virus or bug, so please try to think positive.

Please give my love to Brian. I'm praying for both of you.

Love

Nicki x

[Ellie]

That's just it, Nicki - GP said she wanted to speak to the doctor at the hospice! That's what makes me think it's something to do with the cancer in Brian's spine.

Oh well, just today to get through then we can ask more questions. Brian didn't want to go into it with her on Friday anyway and I couldn't push him to do it, so will just wait till tomorrow.

Thanks for your thoughts.

Love

Ellie

x

[Nardobd]

Argh! I can only imagine the frustration. I guess it could be that she's not sure whether a result relates to the cancer or not but there's little use speculating. Hope you manage to get some answers today or tomorrow.

Love

Nicki

[Ellie]

Brian rang doctor today. She said not to worry but she was just wanting to have another blood test to rule out something. She said it was probably nothing but she wanted to put her mind at rest that his pain wasn't being caused by something else. Yes, it was frustrating for us but we owe this doctor a lot (she was the one that

Brian saw when he got a strange rash and she didn't palm him off with a cream, but sent him for blood tests, which then showed abnormal liver function results and led to his cancer being diagnosed early). So, maybe she's doing a bit of investigative work and we can't be angry with that. It's just the frustration of not knowing what is going on, but I'm more settled now as she said it was ok for us to go away for a few days next week.

Brian is still relatively pain free during the day but waking up a lot at night and having to take OxyNorm. I'm puzzled. Is the radiotherapy working or not? If it was, surely he wouldn't have any pain at all - day or night? Maybe lying down really does press so hard on his spine that the pain isn't contained. Well, he is certainly grateful for pain free days at least and we will obviously make the most of these good times.

Will update again when we hear anymore. Thinking of you all and hoping everyone is coping with whatever they are having to deal with.

Love

Ellie

x