Bury Market - Something for Everyone

Bury market is debatedly the most famous market in the U.K. and in 2006 won the Market of the Year award (links here and here). And as it's down the road from us, a trip definitely had the potential of a good day out.

Although not the most direct route to Bury, we caught a bus to Rawtenstall to catch the East Lancashire Railway to Bury. The ELR is a private railway running steam engines on the old Bury-Heywood branchline. Although started as a trainspotters' hobby (and I was one once, anorak and all!), it is now a valuable community service.

Up the valleys by bus to Rawtenstall (one end of the line) - beautiful sunshine, small towns, old cotton mills, stone terraces ... A short stop in Bacup where the driver advised me I could get off for a smoke. A one-legged pensioner in a wheelchair couldn't negotiate the narrow pavement and alighting so we manhandled him on. Jaime fascinated by a one-legged person!

We just made it onto the train. Kezia and Jaime were enthralled. All the Tommy the Tank Engine comic book images became real, a couple of tunnels - whooh! - the engine hoots and whistles, smoke and chugger, chugger, chugger ... We pull up in Bury and have time for photo opportunities. Jaime is invited onto the footplate (not sure he can be made out through the smoke in the photo!).





And then to Bury market.

Now I have to admit an ulterior motive here! Bury is the home of the Black Pudding! Nowhere else in the U.K. can you have a Black Pudding Sandwich - a hot, boiled black pudding sliced in two with a filling of picallili, tomato ketchup, HP sauce or mustard. A culinary delight!


The culinary delights continued - a meat-and-potato pie with mushy peas (dried peas boiled and mashed) covered in gravy (another traditional northern dish) - and then I took home some real (as opposed to shrink-wrapped) farm-made Lancashire cheese - strong, tangy, crumbly. Angus is a happy boy!

And Nanda went shopping!

Something for everyone!

Blog, MD - New Link

Sam Blackman is a paediatric haematologist-oncologist, whose blog, Blog, MD, I referred to in our last post, clearly merits a permanent link. He does not limit himself to cancers at all and is both thought-provoking and entertaining. See our links on the right.

The Sacramento Bee

Via NHSBlogDoctor and BlogMD

"the power and beauty of the photographs that earned Renee Byer of The Sacramento Bee the 2007 Pulitzer Prize for Feature reporting ... twenty photographs documenting Derek Maden, and his mother Cyndie French, during his 11-month battle against neuroblastoma."

Socialist Healthcare Horror Story

Via Jonathan at Past Peak I come across this story by Jerome a Paris about his son's treatment under the French healthcare system.

Easter Monday

Instead of going on her usual Easter (High) Church of England retreat, our dear friend M. was entertaining her daughter C. for the weekend and they offered to cook Easter Monday dinner for us.

No, not going round their place - they brought the whole kit-and-kaboodle to ours! A leg of lamb, potatoes, parsnips, carrots, greens, mint jelly and dessert!

Me and Nanda had nothing to do! Kezia and Jaime joined in!


I've known M. since I was a young teenager and she has been in and out of my life (along with her sister T.) ever since. However, this is the first time I've met her now very adult daughter. Thanks M. and C. - that was just wonderful!

P.S. ... and M. went on retreat last week and was last seen in the bar! C. of E.!

Landmines and Shavebowls II

I had to transit via an intermediate airport on the way to the U.K., hoping my change of shaving soap would resolve previous problems.

My plan backfired! Bodyshop shaving soap is so soft it might be or is considered a "gel" by airport security - and as the tub was 200 ml, more than the regulation maximum of 100 ml, it was confiscated.

Does Bodyshop sell their shaving soap in airport security-friendly 100 ml tubs? Should this be a new cosmetic industry standard?

Back to Work

I arrived back on Saturday, a 24 hour trip, and have spent the weekend recovering. A bit depressed. Back to work today and busy getting back up to speed. I will try and post more later in the week.

Kezia's neutrophil count was too low to continue treatment Wednesday last, so hopefully this Wednesday.

Patientline III

Lucia tries to draw me into the Patientline debate - I refuse to be drawn!

However, I will make some observations on the Borchardt Ward at the Royal Manchester Children's Hospital. Each bed has a Patientline terminal and yes, televison for children is free. However, each bed also has a regular donated televison set (with headphones).

Concerning telephone sets there are two regular payphones, one at the entrance to the ward and one in the middle of the ward that accepts both incoming and outgoing calls. Given a relatively relaxed mobile phone policy as well and the fact that the younger children have little need for phone services, then it is little surprise that Patientline will not be making a profit on Borchardt Ward, and I suspect throughout the RMCH.

Chickenpox

Jaime has come down with chickenpox. Fortunately, Kezia tested positive for chickenpox antibodies at the beginning of her treatment so she shouldn't pick it up.

But as he is now off school I will be accompanying Kezia on her hospital visit tomorrow as I need to see our consultant J. and a child with chickenpox obviously cannot go the the hospital. And it is a biggie tomorrow - the start of the reconsolidation phase of Delayed Intensification II. This involves IT methotrexate followed by the lengthy administration of cyclophosphamide (our chemical warfare drug!).

Patientline II

I really didn't want to get into the Patientline bed-side telephone price-hike debate - my original post on Patientline was not about this, but rather about electronic medical records.

However, in the light of professional medical opinion that mobile phone use in hospitals should be relaxed (that we reported here), of continuing cuts in government spending on the National Health Service, and the trend towards the privatisation of NHS services, it is both interesting and ironic to note that in their Announcement of the results for the year ending 31st March 2006, two of the "challenges" facing the company are

• Ward closures and an increasing number of empty beds have reduced the number of terminals being used.
• The relaxation by some trusts of their policy regarding the use of mobile phones within hospitals, despite concerns relating to patient privacy (especially given the photographic capability of most modern mobile phones) and to the intrusion into what should be a quiet environment, has also affected performance.
  

Happy Birthday

3 years old! Many Happy Returns Kezia ... have lots more! Stefan organised a beautiful cake, Kezia didn't want to blow the candles out so Jaime did. P. and P. came round as did a couple of neighbours, laden with presents including Dora's Laptop, Kezia's first computer and a very endearing penguin (which given my penchant for Linux was very apt!).

Patientline

The local press has picked up on Patientline's bedside telephone price hikes. And the local Unison shop steward is not impressed! See our previous entry on Patientline here.

P.S. And read the comments to see what the consumers think.

P.P.S. And the Welch Family (via NHS Blog Doc - link right) comment here.

A Great

... seemingly. I had never heard of him but Jon Pritchard, a great in the development of child and family-focussed childhood cancer treatment, died in January this year. His obituary appears in the Guardian today. Ironically he died of the disease he devoted his career to.

Dexamethasone Trips

I have arrived in the middle of one.

When I arrived at Chritsmas, Kezia was at first a little shy and reticent of me - perhaps not surprising given my absence from her life. This time she has welcomed me with open arms- to the extent she walked to the shop and back with me, wanted me to accompany her in her siesta and sleep next to her in the night. She has wanted lots of cuddles and physical affection from me. Within all this she has been generally good with just a couple of sobbing, but not tantrum, episodes.

Such intellectual changes. Language coming on fast - a mixture of both languages. Jaime is teaching her alot of the English he is learning from school. But also the first signs of "thinking" - looking and considering me - I ask "Are you thinking?" she nods her head, "What are you thinking about?" she continues to consider me silently.

Growing up high on Dexamethasone.

What reality poor child are you going through? What trip is this?

P.S. Lauren reports that Fergus also gets "clingy and emotional" on Dexamethasone (see Fergus Times - link on right).

I've arrived !

I've arrived ! Thanks for comment Rob. After 26 hours no sleep forced to play football! The Joys of Parenthood!

On the Way

Just spoken to Nanda. Kezia crying - the Dexamethasone. This time tomorrow I should be on the way to see them, arriving early Sunday. Don't know how much I'll write here over the next two weeks but come and have a look. There may even be some photos.

Electronic Medical Records

Dr Crippen has written several times about the government's £6.8 billion pound initiative to put everybody's medical records on a centralised national computer system (for example, here and here). I feel he is right to be concerned.

Today I read that the private telecomms operator Patientline is raising the prices of its telephone services for patients in many UK hospitals by 160%! I won't criticise them for providing bedside television to the under-16s for free but ...

However, that is not what this post is about ... as a result of the above story I visited Patientline's website and found that they offer a range of other telecomms services to the NHS Trusts including keeping electronic patient records that can be consulted at the patient's bedside. No mention here of data protection and security. I wonder if any of the PCTs have taken up the service

John - we have every reason to be concerned at the Spine, but having my medical records held electronically by a private company that is £80 million in debt is perhaps even more scary!

UKALL 2003 - Delayed Intensification II contd

Treatment day again. Doxorubicin (her last ever - a milestone albeit a minor one!) and Vincristine. Kezia will be restarting Dexamethasone for a week. Jaime started his school holidays yesterday so went along as well. They are back from hospital as I write and Jaime got another present. At my suggestion that I will be able to look after Jaime during the next appointment, Nanda said he won't want to as he likes getting presents from the hospital!

Landmines and Shavebowls

This time next week I'll be with Kezia, Jaime and Nanda. Beginning to get excited.

Everytime my hand luggage goes through the X-ray machine at the airport the above metal shavebowl attracts the attention of security. I guess the handle on the lid could be pressed causing it to explode.

Anyway, my brother gave me a plastic cylindrical shavebowl for Christmas so I think I will take that one this time.

Asylum Seeker Health

The U.K. Parliament's Joint Committee on Human Rights (JCHR) today issued a report entitled Treatment of Asylum Seekers. To those not familiar with the British political system a Joint Committee consists of politicians of both the government and the opposition and from both Houses of Parliament.

The report stated there was "hard evidence of appalling treatment" by the Home Office and highlighted various cases including "one case of a destitute Rwandan asylum-seeker who suffered bowel cancer and had a colostomy bag, but was refused treatment by a hospital and could not register with a doctor."

"The denial of health care for asylum-seekers and their children often amounted to a breach of human rights laws", the report added.

The Home Office has replied "We simply do not think that it is right that those without any right to be in the UK should be given the right to work or access other services."

The Immigration and Nationality Directorate (branch of the Home Office) let them in at a port-of-entry more often than not with a visa issued by the Foreign and Commonwealth Office - if you have a visa, you have a right to be in the UK and so the state has a duty to ensure humane treatment. Additionally, the public health issues involved, of letting seriously ill people live in the community without any care are enormous.

This government constantly undermines the values that made Britain Great.

Link to the BBC report here, link to the JCHR here, link to the report here.

Dichloroacetate II

Someone has just visited my original post on promising research into Dichloroacetate here by searching "dichloroacetate source". Now it seems terminal cancer patients are self-dosing it before it has been clinically tested on humans (story here). Not a good idea.

Another Young Adult joins Josie Grove

See Davo's latest post.

UKALL 2003 - Young Adults II

The UKALL 2003 protocol has a Young Adult Appendix which elaborates on research into adult versus paediatric treatment regimes for young adults where it is stated that in the past "adolescents have received ALL therapy according to either paediatric or adult clinical trials, determined only by local referrals to paedatric or adult physicians". GPs decide the treatment protocol? Oh dear. Dr John - you have to decide a young adult's ALL treatment!

Fortunately, for Lucia and H., they have been put on the UKALL 2003 (paediatric) trial. Why?

Various treatment protocols in trials in several countries have found that pediatric protocols are more effective for young adults than adult protocols (the stats are on p. 128 of the protocol) . Evidence from previous UKALL trials and overseas trials is not conclusive yet but the Event Free Survival (EFS) rates and Overall Survival (OS) rates seem to be better for young adults receiving paediatric as opposed to adult treatment.

The evidence is not considered to be conclusve by the medical profession as sampling (i.e.patients) has not been sufficient, but it is strong enough to comsider further testing.

So an aim, albeit not the principle one, of the UKALL 2003 Trial is to evaluate the use of a slightly modified paediatric regime in young adults.

Differences between young adults and adults at prognosis do not seem to be important. However, there are major differences in treatment regimes.

UKALL 2003 is slightly modified for young adults. Children are first evaluated into risk groups at Day 8 when Slow Early Responders are automatically put on Regimen C. However, the USCCG 1882 trial showed no benefits to this for young adults with "normal" ALL (i.e. with no complications arising from genetic defects who automatically go onto Regime C). At Day 28 Mean Residual Disease High Risk young adults are randomised between Regimes B (with two Delayed Intensification phases) and C. Low Risk patients follow Regime B with randomisation between one and two Delayed Intensifications. No young adults follow Regime A, I assume because their age does put them at higher risk than children.

So, although the Royal Manchester Children's Hospital does not have a young adult unit as Manchester's other cancer hospital does, at RMCH you do get the advantage of following the paediatric UKALL 2003 protocol whilst at Christies you follow the adult UKALL XII protocol.

And all the more reason that the new RMCH should have a young adult unit.

And the message to the referrers is send your ALL young adult patients to a paediatric hospital.

Disclaimer: I should reiterate that this applies to T-cell ALL, not B-cell that goes on another procotol that I know nothing about, and certainly not other forms of leukeamia.

UKALL 2003 - Young Adults

Lucia draws my attention to the fact that in latest version of the UKALL 2003 (posted February 2007 - link on right) has now increased the age range eligibility to 19 + 364 days. The protocol has a Young Adult Appendix which elaborates on research into adult versus paediatric treatment regimes for young adults - next post.

UKALL 2003 - Delayed Intensification II contd

Second doses of doxorubicin and vincristine are scheduled for today. Peg Asparaginase Saturday last - Jaime went with them to the hospital and received, as Nanda described it, a "big" present. Didn't quite ascertain what ((don't think he's suffering from lack of attention, Rob!). Almost a week's worth of dexamethasone and it has kicked in. Moody. Not sure if she's got leg pains yet as happened in Delayed Intensification I.

Her Hickman Line is playing up. It is allowing medication in, but not blood out. This is probably due to a tiny bloodclot acting as a one-way gate valve. Such micro-clots are pretty common even in healthy people. J., our consultant, does not want to change the line again if not really necessary - especially as we are so near the maintenance phases and the removal of the line.

In other events ... I had quite a good weekend. Friday to Saturday we had an enormous storm. After several weeks without rain, I was grateful to have our cisterns replenished and it rained again today (Monday). However, it brought down our "izaquenteira" (Treculia africana - cannot find an English name) - this is a tree of about 10 metres height that bears medicine ball-size fruit with numerous seeds that are locally prepared into traditional dishes, one sweet, vaguely reminiscent of Indian kulfi, and one savoury with palm oil and smoked fish. The latter I adore, not having a "sweet tooth" for the former. Fortunately, it did not fall on the house but did smash into our wiremesh fencing. Probably repairable. I heard this morning that some poor guy in the city had both his cars smashed by a falling tree!

On Saturday afternoon, seven friends came round loaded with fresh bonito, saltfish, plantains and breadfruit. They cooked, I provided the beer and wine and did a pizza. Good time had by all.

Young Adult Oncology Units

And the previous post leads onto ...

Putting a young adult with cancer into a bed next to a 70-year old or a 2-year old (Kezia) just ain't going to work. Psychologically it is just not a happy mix. Not for any of them. The only thing any of them has got in common is cancer.

There have been studies that putting young adults onto a pediatric treatment regime (and hence pediatric ward) will improve their prognosis. The decision to put you on the UKALL 2003 trial protocol agewise is pretty arbitrary - if you are diagnosed before you're 16th birthday (15 + 364 days), then you are eligible. But I suppose there has to be a cut-off somewhere.

The Teenage Cancer Trust has financed seven oncology treatment units for young adults and aims to finance fifteen more. In Manchester only Christies Hospital has one. Read about them here. And watch a video.

Unfortunately, for Lucia and H. the Royal Manchester Children's Hospital doesn't have one and even at the new children's hospital there are no plans for one. Which seems a bit absurd to me if young adults are going to be referred there.

Teenage

As a "teenager", I definitely was not a child. As a teenager, everything was new. And more often than not unexpected. What had changed?

Primary school to secondary school. Learning basic skills (reading, writing, arithmetic) to the more academic (History, Biology, Mathematics, Geography, French etc) . Independence, often fought for. Curiosity. Cigarettes, alcohol, cannabis, music (I was 15 when "Anarchy in the UK" hit the streets), "rebellion" against my parents' "norms". Puberty and consciousness of sex and anxiously wanting it but never "doing" it. Underage drinking on Friday and Saturday nights, Saturday and holiday job - the boss, Kate, was formidable but took me (hung-over) at 6:30 am under her wing.

Consciousness that I am "me", that I am "Angus". That I have an identity. That I am unique.

I cannot imagine my parents' generation when you could be in the factory from 14, or my grandparents' generation when it was even younger; Where I'm talking from, whether you are male or female, since year dot you may be working, and you may be a parent as soon as you hit puberty and have to be responsible for someone else. You are an adult.

And that is perhaps an important difference between childhood and adulthood. However, in the "developed world" I was not, yet, considered to be useful, I was not yet somehow adult. I was in a limbo between child and adulthood that has become known as "teenage". So I want to stop using "teenage" now and talk about young adults.

What else changed?

Cancer.

Nope.

Learning I might die?

Nope.

But for 2200 people per year (just) in the U.K. that is part of the above formula, of being a young adult.

Rob, in Siblings II, wonders what Fergus (aged 7) understands about his leukaemia and concludes "not much", the treatment is something to be got through. Kezia has even less understanding.

As a young adult, just when you are learning the ropes of being adult, learning about sex, birth and death and much else, then learning your own mortality, understanding that you may die and soon, must be pretty rough.

Lucia and H. and Josie Grove understand.

Siblings II

Rob of Memory Pebble left a comment on the Siblings post which I feel really should be published as an entry in its own right:

Norah, the sibling of our boy with A.L.L., is a remarkably resilient 4-year-old (she just turned 4). I don't think we try to "make up for" all the attention that Fergus gets because of his illness, but we make it pretty clear how much she is cherished in our family.

Still, on some level she may feel that she's missing out on something, because she often asks for medicine and/or claims symptoms that she doesn't really have so that she can have medicine. She also has a penchant for putting bandaids (don't know if they are called that in the rest of the world or not) over every minor scratch she can find on her body. And I did overhear her recently tell Fergus, "When I'm six, I'm going to have cancer too," as if cancer is something to aspire to.

I think it's interesting how kids interpret the idea of cancer, and I wonder, exactly, what the parents of Fergus' friends have told their kids about him.

Some, I know, have avoided the issue altogether (in one case because of an illness in their own family). Others have told their kids something about it, but I don't know what, really. Perhaps it doesn't matter.

I also wonder what fergus' exact understanding is. I mean, I know he knows it's a serious thing, leukemia, and that all these treatments are meant to get rid of "his" leukemia. But it's not like we've held him down and said, "Look, kid, this could kill you." And most of the kids books on the subject are kind of vague on this point. But still, he knows it's serious business, I think, and not something to aspire to--no matter how many boxes of LEGOs the treatments translate into.

He just turned seven in January, so maybe he's not ready to think about whether or not his illness is life-threatening. Or maybe he's just waiting until the treatments are over, and the port is out of his chest, and he can start to feel like this is behind him. He might, this summer, be ready to talk about mortality, and about dodged bullets.

But I'll be ducking for a long time to come.

He also pointed me to another site he keeps about Fergus and Norah.

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.

Cancer Terminology - Survivor

A short while back I asked Lucia to give us her thoughts on the term "survivor". She has here. Thanks Lucia.

Let us know what you think.

It's not just the Doctors

... it's the nurses as well.

UKALL 2003 - Delayed Intensification II

Just telephoned Nanda at the hospital - Kezia has started Delayed Intensification II. The last of the intensive stages - Whoopee! Eight weeks to go and we start the maintenance phases!

Next appointments tomorrow and Saturday.

Bilingualism

When Kezia was born. I decided to speak to her directly only in English, although obviously the language of the house is Nanda and Jaime's national language. Obviously, our aim is for her to grow up bilingual.

Jaime's exposure and repertory, soon after I had first met him and Nanda, was limited to "fuck ... off, you, this, or the other " which he used (and I use quite liberally in the broadest sense of the word - I am not a linguistic conservative) ... but thank you're deity he has now forgotten his first lesson in Anglo-Saxon.

But he has probably relearned ... my experience is that kids learn "bad" language but also learn where it is appropriate i.e. not in front of adults (teachers and parents) but ok in the playground and street.

Anyway, when all this shit happened in May of last year, Kezia was beginning to produce her first language and passively understand quite a lot of my English. Now I speak to her on the telephone in her first language - only fair as she does not have all the para-linguistic tools (facial expressions, gestures etc) to help her understand. However, I'm not too worried as she will be starting playgroup in September and I guess my brother's family, the nursing staff at the hospital etc are speaking English to her.

I am now more concerned with Jaime. He is doing very well with his second language, English, because of his exposure at school. His teacher seems very happy with his progress.

However, he is no longer learning literacy skills in his own language. When he comes back here, this could be a problem. I phoned A. last night who spent several years in Germany with her younger son when he was in his formative years and she confirmed the problem. On their return she had to arrange home-tutoring to bring him up to speed.

As A. works in education and as I'm doing some English proof-reading for her right now, I've asked for "payment" of two years of first-language primary school textbooks to take with me in April.

Not sure how Nanda will cope with the role of teacher or if we can arrange someone else. Of course, I will be bringing this up with the school and our social/healthworkers but I'm sure there will be severe limitations to how they can help.

NHS Hospital Car Parks

On Monday the BBC ran this report on Primary Care Trust hospital care parking income. A staggering 95 million with 74 Trusts not providing any data. Thirty Trusts make over 1 million from their car parks whilst two make over 2 million.

The Department of Health's guide Income Generation, Car Parking Charges - Best Practice for Implementation says

27. NHS bodies are strongly recommended to have some kind of ‘season ticket’ arrangement, allowing free or reduced price parking for:

- patients with a long-term illness or serious condition requiring daily or regular treatment;

- relatives/prime visitors of patients with a long-term illness or a serious condition requiring daily or regular treatment.

28. NHS bodies are also recommended to have a weekly cap on car parking charges for patients/visitors having to attend on a daily basis.

The Central Manchester and Manchester Children's University Hospitals Trust has this information for out-patients. However, information for our own hospital and Manchester's other cancer treatment hospital, Christies, are not provided. All out patient paarking is commercial apart from 26 places in the A & E car park which is free for just 30 minutes.

Macmillan Cancer Support are not content. This press release was issued yesterday. They have started a Travel and Parking campaign which is calling for:

• patients undergoing treatment for cancer should be eligible for assistance on a mon means-tested basis under the Hospital Travel Costs Scheme (HTCS)
• patients undergoing treatment for cancer should be exempt from all hospital parking charges
• the HTCS should be better publicised and reimbursement arrangements simplified
• cancer patients travelling to hospital for cancer treatment should be exempt from all charges and tolls for using roads, tunnels and bridges

Their latest report which makes interesting reading and highlights the finacial hardship caused to cancer patients by travel and parking can be found here in pdf format.

Update: Information on car parking at Christies Hospital can be found here.

Siblings

Rob here at Memory Pebbles expresses concern on the effects of all the attention Fergus (older brother) gets on Norah (younger sister).

"Our 3-year-old daughter is growing up in a world that is weighted, in some ways, toward her brother, toward her brother's illness and all the secondary bullshit that goes with it."

Quite a lot of children's "literature" exists to explain to siblings their sister or brother's leukemia (or whatever). I guess it aims itself at different age groups etc.

I haven't really got into it and don't have an opinion on how well different publications have been done. Jaime's English is not yet good enough to read such things (but probaby soon will be) and I am not aware of anything in his first language.

Do please send reviews or recommendations.

However, I think in our case the "attention" thing is not a problem. Jaime is having such a good time at school, with all the stimulation (computers, musical instruments, books, language, Massage in Education (?!) etc etc) that doesn't exist in his home country's education system that he doesn't feel resent towards Kezia.

Additionally, as most of Kezia's treatment is when he is at school, he doesn't see too much of it and it doesn't disrupt his life so much. He's visited the hospital on a couple of occasions so understands that is where they go, they are going to be ok and he will be looked after. Ok - so the other weekend Nanda and Kezia were hospitalised and he stayed with M. - but there he got new experiences to keep him occupied.

And anyway the Royal Manchester Children's Hospital is fun and I bet he has fun when he goes there!

We're lucky.

Maybe it's a bit different when it's the older sibling who is ill. Surely, there have been some psychogical studies about all of this.

However, Lauren and Rob, the fact that you are aware of this, means I am sure that Norah is fine and will be all the better person in herself for having lived alongside Fergus' illness.

Cancer Terminology - Three Posts in One

Weekends, when I have no Internet access, allow me to reflect ...

... and now, Potentilla/Christian at Auspicious Dragon and Lucia have given me food for thought on two subjects. The first of which is semantics ...

Lucia's first reaction to the labels "victim" or "sufferer", was to reject them and was to call herself a "fighter". Christian somewhat objects to the term "fighter" and I'll quote from Metastastes:

"Someone asked me on the phone today “and how are you, are you still battling it?” or words to that effect. “Oh fine”, I said, and nearly missed the point of the call, being away with the fairies worrying about conflict metaphors for chronic illnesses such as cancer".

Read the rest of her post here and then come back to read the rest of this.

So what do I think to these metaphors - possibly, Lucia, we are not "fighting cancer". We are fighting opinions and mindsets.

... oh and Lucia I'm still awaiting to read about "Survivors"!

CHARITY

Christian said to me, in response to my comment,

"I was hesitant to accept Clare's offer of a quilt for Kezia and link to her, I hate accepting /asking for financial assistance now and again from Clic Sargent, I hate seeing massive fundraising campaigns by parents for their child ... all of this stinks of "victim". But out of necessity, have to accept the humiliation".

on the previous Cancer Terminology post.

"I can see why it might feel humiliating to accept help from charities, but look at this way - a lot of people who work for/donate to charities get plenty back by being able to feel noble and generous. And others are doing it precisely because they have needed help themselves in the past and want to pay back."

Lucia said to me that the reason she is organising Lucia's Fabulous Fuchsia Ball, a fund-raising event for Clic Sargent, is payback (and if you are able, please go).

And, yes, Clare, (Quilts4leukaemia), I feel humiliated by your kind gesture ...

I'm going to discuss with Nanda the ACLT initiative when I next go back to the U.K.

Clic Sargeant and others are filling gaps in state-provided social welfare. For example, and as I've pointed out before, we are not receiving Child Benefit (although Kezia is a U.K. Citizen) and Disable Living Allowance. Clic Sargeant etc are filling a gap ...

... which leads me on to ...

"VICTIMS"

Potentilla comforts me about the "Bunny Rabbits and Angels Brigade":

"the victims (patients or their families) are the ones who go all squishy and expect to always have everything done for them and don't hold themselves to any recognisably adult standard of behaviour, not the people who just need a bit of financial assistance from time to time. I have been having chemo with a victim, and believe me the distinction is very visible. (Actually, I suspect victimhood is a lifelong characteristic, and being diagnosed with cancer just gives them one more area to whinge about)".

I see Potentilla and Lucia, and H. and A., Rob and Lauren, Josie Grove and Cass and many others living full lives with many and diverse interests. They all have a life (and, in the case of the latter two, they continue to in the grave).

The "victims" don't help the rest of us - cruelly perhaps, but I will say it, get yourself a life.

Side Effects II

Potentilla's most recent post on her Metastases blog over at Auspicious Dragon discusses amongst other things drug side-effects. When you feel bad, is it the drug or your illness and other issues ... I'd like to quote her:

"Whilst researching the side-effects of Cefalexin (to see if nausea was one of them, which it is, but I think my nausea was in fact because of jaundice), I read a couple of sites which allow patients to “review” drugs. I’m not that convinced about the benefits of these, since anecdotes are not evidence, but given the difficulty of finding out what side-effects are genuinely possible or probable (as opposed to the legally-driven Patient Disinformation Leaflets), they can be of passing interest.

Anyhow, I was mildly amazed by how confident many of the posters were about what actually caused their symptoms - I mean, whether it was the drug, or the original condition, or something else. (Why have I been nauseous?) OK, the human race is collectively too ready to confidently ascribe causation where none exists - but I also realise that many of the posters have something which I no longer have, which is a default state of systemic wellness. Most of the time, they feel OK; so when they start to feel ill, it must be easier to notice what the symptoms are. (I say systemic to exclude the non-systemic chronic sources of not-wellness, like myopia, or verruccas, or piles, or cold-sores).

A default state of systemic wellness is the norm in rich countries. When we are systemically ill, we at the very least have sympathetic allowances made for us, possibly formal ones if we are, for instance, sitting exams; and if we are a bit worse, we actually opt out of normal life for a while. I was recently reading something about “national IQ” studies, including the fact that “national IQ” for many African countries, especially sub-Saharan ones, is lower than for rich countries. As you might expect, there is much discussion and dissension about possible reasons for this (measurement effects, culturally inappropriate tests, malnutrition in infancy, genetics); but one possible reason that does not seem to be much considered is that systemic wellness is not the default state in the relevant areas. In a poor country, even if you practically always have one, or several, untreated systemic infections, you can’t afford to opt out of normal life. It seems really quite likely to me that a significant proportion of people being IQ-tested in such countries are, by rich-country standards, ill. (And of course, ill people in rich countries mostly don’t take IQ tests, which would increase the effect). Being systemically ill certainly can have an effect on cognitive ability, as I know from personal experience. Perhaps the researchers need to recruit self-sacrificing people who are willing to sit IQ tests both when they are systemically ill and when they are well, to try to get an idea of the size of the adjustment that would be appropriate. Assessing what proportion of testees were systemically ill would probably be easier."

In the "developed world" we take good health very much for granted.

Mobile Phones in Hospitals

Link to a story at the BBC in which calls are made to relax rules on mobile phone use in hospitals.

I have to say that it is very useful to us for me to call Nanda on her mobile on appointment days to check everything is ok. If not, I can then make arrangements for Jaime's childcare etc. Last Friday is a shining example.

Quilts 4 Leukaemia

Clare at Quilts 4 Leukaemia has linked to us and promised a quilt for Kezia. The project involves worldwide volunteers making quilt patches which they send to Clare in France who, along with friends, sew them together to make a quilt.

Fortunately, she assures me, they don't feature "Bunny Rabbits and Angels" but are done in red and white to represent red and white blood cells.

Clare was inspired when her brother-in-law was diagnosed with leukaemia four years ago and, although now well, is not in the clear.

Such a gesture deserves a reciprocal link.

Lice and STDs

Jaime's school's headlice outbreak is inspiring me to a new post and a confession ... yes, I once had lice. Except they were not on the top of my head ... they were pubic lice.

It's the nearest I've got to a sexually tranmitted disease (thank a deity) but the story behind it is almost a Moliere farce which I will relate here before I get onto the more serious issues ...

I've already said (here) that when I left home, I started experimenting with my sexuality. And I've already said (here) that I trained as an EAL teacher. As well as teaching practice in the U.K., we went on teaching practice to Portugal in 1987. During my PGCE course I met a woman who was in a long term relationship in Madrid. We had started sleeping together but she still had every intention of returning to C. in Madrid. We all went to Portugal and I, for a brief six weeks, met up with Alex and he gave me pubic lice. As little as we could during six weeks in shared rooms in a pensao, H. (not the one in the leukemia posts!) and I got together ... and as a result, little did we know, those little beasties jumped.

We had arranged to go to Madrid over the Easter holidays. H. and C. would put me up, I would meet some friends ... and H. and I would keep mum. Well, you guessed it, she passed on our friends to C.

So ... we tried to bluff it was bath towels. Could have been but ...

The follies of youth. To be quite honest we were very lucky!

Given NHS Blog Doctor's constantly harrowing tales of deteriorating healthcare provision under the U.K.'s National Health Service, I decided to do some research into what was happening in the field of sexually transmitted diseases (STDs) or as it is known in the medical profession genitourinary medicine (GUM).

This webpage from the international AIDS/HIV charity Avert says it all. Not happy reading.

First off, the number of diagnosed cases of STDs in the U.K. has increased by 60% between 1996 and 2005. The number of cases of syphilis has gone up by 2054%! Wow!

Something is not right! I will quote from the Avert page ...

"A national audit of GUM clinics, conducted in November 2006, found that only 57% of clinic attendees were seen within 48 hours. Although this represents a considerable improvement since May 2004, when the proportion was just 38%, it still means that more than one in three attendees are having to wait at least two days to be seen. This is a consequence of the government advising people to get tested for STDs and then not providing the resources to enable them to get help.

Long waiting times for treatment at clinics are increasing the spread of STD epidemics. The worst aspect of the soaring STD levels in this country is that they are entirely preventable."

The government's response ...

"In November 2004, UK Health Secretary John Reid announced proposals for a £300 million campaign to tackle the rapidly increasing rates of sexually transmitted infections. "Prevention messages are not getting through," he said, "We need to act now on sexual health - and make it a priority." It was hoped that this money would help to achieve the government's 2008 goal of having all patients seen at GUM clinics within 48 hours.

£130 million of the funding was meant to go towards the modernisation of GUM clinics, with £40m devoted to contraceptive and other preventative services. Another £50m was to be spent on a TV awareness campaign aimed at young people, supposed to be the largest campaign of its kind since the 1980s "Tombstone" adverts.

Whether the planned modernisation actually occurs is highly dependent on the money being spent wisely by NHS Primary Care Trusts (PCTs). Unfortunately, this does not appear to be happening. In August 2006, The Independent Advisory Group (IAG) on Sexual Health and HIV released a report detailing how much of the £130 million given to PCTs had been used to pay off debts rather than improve sexual health services. Of 191 NHS PCTs surveyed, only 30 were actually spending the money exclusively on sexual health services. The rest were using some or all of their allocation to fill funding gaps and combat overspending on hospitals, drugs and GP services.

The TV campaign has been delayed, and its budget slashed from £50 million to just £7.5 million. It is believed that its postponement was at least partly due to concern among politicians and healthcare officials that a general increase in STD awareness would cause more people to seek testing, putting extra pressure on the already overwhelmed and underfunded GUM clinics."

Thank you Dad for throwing a condom at me and giving me a lecture on unwanted teenage pregnancies when you found me kissing my first girlfriend at the age of 14!

School News

From Jaime's teacher ...

Hello Angus

Glad to hear Kezia has been allowed home, hope everything is going well. I am extremely pleased with Jaime's progress. He speaks a lot of English now and greets me every morning with 'Good morning Mrs Sidell'. I will be sending a praise postcard home this week so he can share his achievements with the rest of his family.

He is a well mannered, well behaved little boy and an asset to our school!!

Best wishes

Congratulations Jaime!

In other school-related news, apparently there's an outbreak of headlice at school - Jaime's not picked them up yet but best to be forewarned ...

Back Home

Kezia and Nanda got home Sunday afternoon. Phew!

Jaime had a good time with M. They went swimming on Saturday and he went to Sunday school at M.'s church. They then picked up Nanda and Kezia in the afternoon. He got a prize at school on Friday for progress in learning English - M. tells me he is now producing short sentences. (So maybe he can translate for Nanda and save the NHS some money!). Thanks again M.

Kezia received vincristine on Friday but her counts were too low to receive IV methotrexate - so we've now finished Escalating Capizzi II. Next up Delayed Intensification II - which Lucia assures me is the shittiest of the lot! Apparently, H. has just started it and is feeling dreadful.

Voice over IP

Here's an interesting trial from the land of flying doctors, Australia, to support pediatric cancer fighters and carers at home by using video telephones.

I know how important VoIP is now being to us to be able to stay in touch and to make sure everything is ok during, for example, hospital visits. Thus later this morning I wilI phone Nanda at the hospital on her mobile from my computer using Skype to ensure they will be able to get home in time to pick up Jaime from school. If something is wrong, I can then get in touch with the school, the social worker etc to sort something out. All at minimal cost.

Unfortunately, Nanda has not yet got a grasp on Skype on the laptop Talia gave us and that is in the U.K. so we cannot yet video chat for free. But I will be sorting this out on my next visit.

I would have preferred to use WengoPhone as it supports video on Linux (which Skype doesn't, only on Windows!) and is open source (which Skype isn't). But for various technical reasons it's not working for me. When our U.K. video Skype is working, I'll just have to boot into Windows (yuk!).

Update 13:00: Kezia went to hospital with a fever. Now her line is blocked or dislodged so they cannot yet give her a blood transfusion. Awaiting an X-ray. Have had to arrange to get Jaime picked up from school and potential childcare over the weekend. Thanks M. Rung the school and hospital. Will ring back later.

Update 15:30: they managed to clean the line and she is now having the transfusion. The nurse tells me Kezia's doing fine. But it looks like they will have to stay over the weekend.

Thank you to the inventors of VoIP!

Later Life

Rob, on Memory Pebble, has expressed his concerns about the future when his and Lauren's son Fergus is supposedly recovered from leukeamia. This has been a huge niggle at the back of my mind and now is the first time I am going there ...

As he quoted me, I'll quote him ...

"Even here, with a year of treatment to go, and no major scares to-date, and prognosis (hopefully) good, it's clear that we will never be the same family we were before all this. Which is not to say that something is ruined or damaged. Just that it's different. Our 3-year-old daughter is growing up in a world that is weighted, in some ways, toward her brother, toward her brother's illness and all the secondary bullshit that goes with it. And our son, already such a cause for concern--a unique, wonderful, sensitive boy--will be affected by this stuff in ways we will not see for years. Two questions among many:

How will this experience affect his relationships with his peers? Studies show that kids who have had cancer live more isolated lives, have fewer friends, etc.

How will these chemicals we pour into him affect him in the future? We've already seen that they have messed up his neuromuscular abilities (a physical therapist earlier this year said he had the gross motor skills of a three year old...he's six), but what about his brain? We see temporary affects of certain drugs when we give them (several days after his 24 hours of methotrexate he can get spacy and inattentive), and sometimes I think his drawing (while still prolific and wonderful) has become less precise over the last year.

But mostly I worry about the long-term affects from all these drugs, and I am particularly creeped out by what goes into his spinal column (currently he gets chemo in his spinal column once every 12 weeks). Studies have shown a higher incidence of learning difficulties among kids who have had chemotherapy in the past, and it breaks my heart to think of Gus, who knew the alphabet at 18 months and can read just about anything now, struggling to think, or to pay attention, or to remember, or to learn.

Finally, the thing that may never go away is this lingering low-level fear that the other shoe is about to drop. When does the fear of relapse or scary complications go away? After treatment finishes? Doubtful. After five years? Maybe. But my guess is it will always be with us, to one degree or another. Even those of us whose child is handling treatment well--has never relapsed, has never gotten an infection that couldn't be fought off--dread the day when the delicate balance is lost, and we spin into a nightmare scenario. Hopefully it will never happen. But on some level we always have to be prepared. It's life during wartime."

Until we die Rob ...

As a result, I went to the "Survivor" pages on Patty's Pediatric Oncology Resource Center (link on right) and just looking at the titles of her bibliography makes me depressed.

You will see me blog more on this, as I am also sure Lauren and Rob will. Slowly, I'll get through Patty's references and talk to our consultant ... but tonight this is depressing and I don't know what to say to Nanda ...

I'm scared.

P.S. Lucia, here's a new word to discuss - "survivor".

NHS Translation Services

I am grateful to Hospital Phoenix in the comments section of NHS Blog Doctor's latest post (on the proposal for doctors to be able to prescribe "social services" presumably without extra funding) for pointing me to these articles in February 24's British Medical Journal arguing for and against cuts to interpreting and translation services in the National Health Service. (And here and here are the comments).

These were in turn inspired by a BBC report here estimating the costs of such services.

In the BMJ article arguing for cuts in NHS interpreting/translating services GP Kate Adams suggests that doctors should be able to "prescribe" English classes andd to quote "when the NHS is facing a huge financial crisis, is it in anyone's interest to see the costs of translation services increasing?". Oh ... so interpreters should accept less pay, or English teachers are cheaper than interpreters?

I am appalled!

Read the articles yourself - here I will confine myself to why such services are so valuable to ourselves and why any proposed cuts would harm our daughter Kezia.

Kezia will be three years old next month. She is learning both the language of her birth place and English but is hardly proficient to articulate how she feels to medical staff in whatever language. Her mother, Nanda, does not speak English and is not British. Kezia is British because I am. Nanda needs to articulate for Kezia. Nanda does not really want to be in the U.K. but we both want Kezia to be better so we are reluctantly a separated family but from where I am writing she would be dead by now.

The NHS has provided Nanda with interpreting services when Kezia has to go to hospital. And the excellent Language Line telephone interpreting services are available if there is an emergency in the middle of the night. If such services were not available, Nanda would not know what to do, would not be able to call the hospital, call for an ambulance etc and this could potentially be fatal for Kezia.

Nanda has now declined interpreting services for regular hospital visits as she now feels she knows the routines well and, more often than not, understands what is required medically much better than an interpreter who is unfamiliar with chemotherapy, Hickman lines, lumber punctures etc. Being told what you already know can feel a bit patronising. But we are both comforted to know the services are available if required.

But Kate Adams would prescribe English classes for Nanda. I'm not sure how she would organise them. Two or three visits to the hospital each week, on different days, at different times, looking after Kezia at home, picking Jaime up from school, shopping, housework ... Kate, will the NHS pay for a childminder for Kezia whilst Nanda has her English classes? Will the NHS chaperone Kezia to hospital whilst Nanda has her English classes?

The General Medical Council states "To communicate effectively you must make sure, wherever practical, that arrangements are made to meet patients' language and communication needs".

I'll raise a glass to that!

(Here's an interesting link to the Poseidon Trial which "is a research study designed to see whether people who go to story-sharing groups in their own language led by a bilingual health advocate, get better control of their diabetes and make other health improvements, compared to people who have standard education sessions led by nurses").

On Blogging Cancer - a reply to Lauren and Rob

Lauren and Rob commented on my first entry on this subject and it has given me food for thought. They have actually emailed me with further comments and I've linked right to their website, Memory Pebble, which is a grand example of what a "cancer" blog should be (what a horrible ugly word is "blog"). First of all, I must say thank you both for your comments, and your website/blog is wise, witty, entertaining and informative. I must also thank Lucia and Barakta for their comments.

I've given a brief summary as to why I started this blog on our profile. Some are very personal and some are to give something back.

The personal can equate, I am sure, with the what I will euphemistically now call, and forgive me, the “Bunny Rabbits and Angels” posts. It is a form of personal catharsis, and, I guess, keeping family and friends informed. It's not meant for wider-world consumption. Except it is out there on the web for the wider-world to consume. It is part of our blog as well (and as well as occupying me and keeping me out of mischief during the long lonely times I spend without my partner and children – see the entries on last Christmas for examples). However, I do wonder whether this is the right format. I have friends who put out a round-robin newsletter as an email attachment to keep their family and friends informed of their news. There are emails themselves.

A sub-category of the "Bunnie Rabbits and Angels" post are the In Memoriam posts ... I really don't know what to say! I am sorry. But for the sake of your loved one, please give something back. Lucia here has just posted about the death of Josie Madeline Grove and her parents' wish to commemorate her, her courage and her smiles by setting up a charitable foundation to support leukemia research, people with leukaemia and their carers. Josie didn't want "Bunny Rabbits and Angels".

I admire Sophie's Diary (link on right) as it's written by a young girl, now of an age to write about her experiences on the web – without “Bunny Rabbits and Angels”! I admit an eight-year old does not have the enquiring, intellectual and literary skills of an adult – but I've used the term “activist” and she is one! She relates her day-to-day life as an eight-year old who just happens to have leukaemia.

Rob – you expressed that we don't know what sufferers and carers are going through. Yes, every case is different. Us carers don't really know what our children are going through. They cannot express themselves like adults. However, perhaps we can extrapolate a bit from what adult sufferers go through. But, as I've said before, at least our 3-year old forgets from one day to the next and has no vision of mortality. As carers it is shit, that's what is common. In our own limited experience so far, every carer is saying to every other carer “your experience is far worse than mine”!

The other sides: I want to give something back and I want to be informed. In the UK our treatment is free and unconditional – fuckin' marvellous! Praise to the system of the NHS! I am grateful. And I feel I want to give something back! I'm trying to pay back through this blog, Lucia through her blog, her work with YOBS and the Teenage Cancer Trust. Patty (in the U.S.) by establishing the Paediatric Oncology Resource Center (links right). Josie's parents ...

Information: can you get enough of it? For me and Patty, no. For other people with cancer and carers, they don't necessarily want as much. But to some extent or another, we all become “lay experts”. The depth of information available varies – most is from charity sites. But the blogs of people with cancer and carers can be important sources of information. We do have a perspective that is different from the medics.

The charities have a role in informing the wide world as well – otherwise they wouldn't be getting the donations. But their reach and our own need widening. And the world needs to see us not as “victims” but as humans.

Which brings me to a final point – entertainment. Each of us is human. For each of us our interests are diverse, for each of us, there IS more to our lives than cancer. If we can entertain the wider world, then they will come back to our blogs and perhaps learn something about cancer along the way. Additionally, the entertainment can provide ourselves with some relief along the way. For that reason I have linked to Auspicious Dragon and the recently departed Cancergiggles on the right.

Lastly Cancer Activism – it's a term I am coining because of our own experiences, because of those of Patty, Lucia, Auspicious Dragon, Cancergiggles, Sophie, Josie, yourselves etc. I haven't thought it through yet ...

P.S. Rob and Lauren - on reading Memory Pebble you made me cry with the realisation of how much I am missing the experience of watching Kezia growing up - the laughter and tears, playing and talking ...

NHS Together Day of Action

The Daily (Maybe) has a report on last Saturday's NHS Together Day of Action in Cambridge with links to other reports.

Cancer Terminology - "Sufferers", "Victims" and "Carers"

Lucia on her own blog, and quoted by John on NHS Blog Doctor , said

"Obviously, people will come on here expecting to read a heart wrending tale of a "sufferer battling through chemotherapy". I'm not a sufferer, a victim, or neither am I "plucky". Sorry if I don't match your requirements. What I aim to do through my blog and my website is say "Yes, us teenagers do get cancer, so lets face the facts and deal with it". Until now, my blog has been a way of letting off steam. Now it's time to make a difference."

I have been consistently using the terms "sufferer" for someone who has leukemia and "carer" for someone who looks after someone with leukemia. "Victim" is another extreme term used. I, as Lucia, am more and more unhappy with this terminology.

In 1980 when I was eighteen I left home, with relief, to go to university. I started experimenting with my sexuality. The first rumours started comng out of London of a mysterious disease hitting gay men. We didn't think much of it. I spent my second year abroad and when I came back it was a reality, although still unknown. Terence Higgins died. Friends of mine died. HIV and AIDS (let me remind you, acquired Immuno-deficiency syndrome is, in many ways, simiar to ALL) were identified. It was blamed on gay men. But then some haemophiliacs got it through blood donations, then some heterosexuals , and then it was discovered to be a worldwide pandemic ...

And the gay community said we are not "victims". I agree we are people "with" - just like you've got a cold, the flu, dermatitis, acne etc etc

I have asked Lucia, and the YOBS, to talk to me about this but would appreciate wider comments as well.

UKALL 2003 - Escalating Capizzi II Update

Kezia's neutophil counts were too low on Thursday to receive IV methotrexate. As I've said before, this is not a bad thing as it means she has reached toxicity at less than the maximum dose. So she just had vincristine.

Next appointment is on 9 March - the last of Esclating Capizzi II. Then a two week rest before starting Delayed Intensification II.

NHS Together - Update

Here's a link to the the latest BBC story on the NHS Day of Action today.