Small Steps

Yesterday the Macmillan nurse visited Kezia´s school (from September) to discuss her special needs with her future teacher (who just happens to be Jaime´s teacher this year – quite happy with this continuity – Gill already knows us, has met Kezia and knows of our situation). We are happy her Hickman Line is out, one less worry at school for both ourselves and Gill.

I do wonder though how Gill is meant to distinguish between and/or react to drug-induced bad moods or misbehaviour versus general childhood petulance. Kezia hits the kid next to her, steals his/her snack or goes into a corner and won´t talk and/or cries. I am sure Gill will be amazing as she deals with kids every day … but absent dad could do with some reassurance please!

On Thursday there is an “open day”, or rather hour, for September´s intake – a kind of familiarisation exercise, I guess, to help avoid tearful scenes on the first day of school. I don´t think this will be a problem with Kezia – at the moment she is impatient to start - “if Jaime can go to school, why can´t I?”. And I know Nanda is talking it up …

Kezia didn´t want to speak to me yesterday – she finished five days of Dexamethasone on Sunday and is moody. Lucia has often related how dreadful this drug is, has had to go on morphine due to the pain it caused so I can only wonder what Kezia feels especially with no means of verbalising it.

Last week´s medical blogosphere “event” seems to have been the bombing attempts in the U.K. by, at least, two NHS doctors (the other suspects, I should stress, innocent until proven guilty). NHS Blog Doctor´s very sensible post on the subject whipped up 97 comments – with particularly bigoted comments from someone called “american md”, I posted two or three of my own in reaction and whipped up Lucia´s support – the dedicated staff (Muslim or otherwise) of the Royal Manchester Children´s Hospital and the NHS must not be subjected to such abuse. I am happy to see that Dr. Crippen posted her comment in his weekly BritMeds.

However, judging by the BBC´s website (ok, it is not necessarily representative ..,), the issue seems to have dropped off the map. There was one headline (non-) piece in the Asia/Pacific section Monday about ongoing investigations in Australia, there was nothing in the U.K. section. Are the government and police not giving press statements and keeping mum or are we so used to terrorist attacks in the UK (international readers, remember what we went through with the Northern Ireland troubles) that non-successful attempts are no longer news?

And, blimey, no-one commented on my own post on the subject – the price of non-fame?

Penultimately, I will point you to two posts by bush doctor in the city about a kid in the Delta region of Nigeria with Burkitt's Lymphoma (here and here). This is what the AfrOx Project is about – don´t just throw emergency aid at healthcare in Africa or Asia but help us develop healthcare systems. Given the state of the NHS and US healthcare, perhaps you´re not so good at that …

Finally, congratulations are due to both Lucia and Fergus (Lauren and Rob´s son) for finishing chemotherapy. I don´t have a deity but will pray the other shoe doesn´t drop. In many ways this could be the most difficult stage – watching, waiting, lingering.

Please don't stop blogging - you are messages of hope for those of us behind you. Lauren and Rob - the photos of Fergus' last chemo and lumber puncture are both inspirational and useful (... and why didn't any of us think about this before?!). Thank you for sharing them.

Social Support - Macmillan Nurses, Clic Sargent and others

Dr John has been critical of the Macmillan nurses.

For those not in the know, these are nurses whose salaries are initially paid and subsequently supported by Macmillan Cancer Support, are based at the hospital and are supposed to provide "community support" (whatever that means) to us. More information is provided here (pdf).

We, supposedly, have a Macmillan nurse. She was introduced, been to the house once. She ignores Kezia and Nanda in the hospital corridor. She has done nothing for us. I don't know her functions except it was explained to us that she would show Kezia's future teachers how to put a clip on the Hickman Line in case of emergencies and to explain that Kezia should be kept out of school if any other kid has a serious infection.

Well, I guess, we can do this, so we don't need a Macmillan nurse.

The hospital social work team consists of employees of the charity Clic Sargent. At Royal Manchester Children's Hospital I would say "bloody marvellous"! T., our social worker, has been to the house several times, looks out for Nanda and Kezia on hospital visits, has helped out on immigration issues, has a good relationship with our consultant (to the extent she has drafted letters from him supporting us), helps us with the occasional financial support. Lucia is enthusiastic about her Clic Sargent support worker, L., who seems to specialise in young adults and is intimately involved with YOBS (Youths On Borchardt Support) and is equally ambivalent about her Macmillan nurse.

Lastly, I'll mention our local (i.e. town or municipal) health visitor/worker. She hasn't actually done very much except drop by the house pretty often with or without an interpreter, check up that everything is ok and offered to pick up and sort out Jaime if there is a crisis. Thank you for being there C. - appreciated.

So ranking this social support? Well, I think it is obvious.

P.S. Why are they called "charities" in the "developed world" and "Non-Governmental Organisations" (NGOs) in the "developing world". Is there a difference? Feedback please and then a further post.