Dear Hannah,

I am so sorry to hear your news, but glad Liz and Bell have been able to offer you such useful practical advice about getting the support that you and your family need.

I just wanted to drop in to say that it sounds as if you are doing a brilliant job supporting your dad and mum in the most difficult of situations. Make sure you take care of yourself and find some time to see your friends.

Warmly,

Cathy

here is an explanation of performance status ranking

http://www.cancerhelp.org.uk/h...efault.asp?page=5566

thank you liz, bell and cathy - all of your help is very much appreciated.

at the moment we are trying to find out about macmillan in our area - we haven't had our district nurse in for over a week now, mum has rang up today and apparently one of them is on holiday and one is ill... mum did get our gp's mobile phone number this morning in case anything does happen and we need someone who is aware of the situation urgently, but this is just temporary until we have someone better to rely on for this help. we are also trying to find out if our district nurses would be able to change dad's feed tube when necessary to as to cut out the trip to the hospital? we have all pretty much decided that it is best if we have minimal contact with the hospital now, as long as we can find the people to come and help us.

cathy - that performance status ranking thing really helped, mum thought it may be a scale of 1 - 10 and dad was at the very low end, and although being at 3 isn't great either we feel it is better than we'd previously thought!

i believe dad is already under the 'special case' thing, or in the process of. mum's trying to find out about the macmillan grants at the moment (another thing we need district nurse for!!) because we've been doing/planning days out, and there are a lot of us including our family friends who have been very supportive too.

it seems that the people who have experienced this to the extreme where they have lost a person close to them don't talk about it - before dad had his laryngectomy we met a couple who talked of the laryngee club and they said they hadn't known anyone who hadn't survived after the laryngectomy, but after reading through threads on here it's clear that there are lots of people who don't survive... i wonder whether they don't tell you so as to make you go through with it, or whether it's something people just don't want to talk about. i feel as though i want to help people who are going through this situation, i want to tell them from our experience what to expect as far as we know, because i wish that i'd have known what could/might happen right from the start and i think it's a shame that the hospitals aren't completely honest with you, even at this point, unless you drag yourself round the country trying to find the truth.





i do have a question - we've been to the seaside on sunday, we're going to a country park on sunday, the zoo on tuesday etc. but one thing my dad loves is drayton manor (a theme park) and we're sort of planning this but we're very worried about if this kind of thing is ok? will he be allowed on the rides, or even only certain ones? eg. do you think he'll be allowed on a rollercoaster? and another thing we worry about which may just be our minds going into overdrive - if dad does for example go on a rollercoaster, could this cause him problems where the tumor growing around the artery is concerned? speed it up?? cause it to rupture?

thanks everyone, kind wishes to all of you and yours,
Hannah

Hi Hannah

i would definately think g force on some of the rides would be a real problem and best avoided.

love liz