Maddy!!!!!

Hey guys, just to let everyone know that i'm ok......... for the time being..............
Aunty Wendy's visiting today and tomorrow two sets of mates and a family friend. Dad stayed over last night, giving mum a chance to stay at home and go to Mytholmroyd Gala with the boys. We had fish and chips for lunch again (ummmmmmm) and Mum should be bringing something for tea.
My4th cycle of chemo is going ok so far, no signs of nasty side effects yet but i'm sure they're on their way. I can't wait..........
Anyhoo, got to go and have my port accessed, byeeeeeeeeeee!!

Baton change for 4th cycle

Julie has been looking after Maddy in hospital without a break for 8 days now....so time for a change.
Chris will be 'on duty' for the next day or two, so that J can recuperate and spend some time with the boys.
Maddy's 4th cycle started at 11.30 this morning.

Frankie & Benny's...

.....in Kirkstall, is where all the family enjoyed a few hours out of Jimmy's, with everyone eating really well from the New York Italian menu.
Fresh from Wednesday's demo in Hebden, the Make Poverty History tape, was unfurled for the camera.



Here's a couple more pics:





Then it was back to hospital to prepare for the 4th cycle,
due to start later this morning.

Walks

Maddy continued her progress today and seems in fine form. Those avid comment-readers amongst you may have noticed that she made her own comment on Wednesday.
She might even start posting her own blog entries soon - who knows?!?

The other achievement today was a couple of unassisted walks down the ward corridor. Considering her relative frailty and the fact that she's been bed-ridden for the last 5 days or so - that is no mean feat.
She has continued to eat as well as could be hoped - weetabix this morning - some fish & chips later in the day - very pleasingly her weight is up by 2kgs.

The more experienced blog readers among you might well have sussed out what all this means. With her very best interests at heart, the medics at Jimmy's won't allow Maddy to enjoy feeling well for too long - her next chemo cycle is looming.....

"Going Up"

"Going Up". These were the words Chris first heard when he rang Julie on Tuesday afternoon. They weren't spoken by Julie however, but came from an unfamiliar voice in the backround. Maddy & her mum were returning to the ward in the lift, having visited the shop for various snacky foods,....flapjack, coke, chocolate etc... Maddy had a few hours free from her drip trolley today and, compared with the last few days, she got about a bit, also managing a visit to the day room to watch TV and chat with other patients and families. Despite having eaten next to nothing over the last week, she has maintained her weight, albiet a little on the 'slim' side. The TPN has helped her, combined, with a rather sedentary lifestyle. Today, she's been 'snacking' for England and is looking and sounding much livelier - perhaps she might even put on a few pounds now. Her neutrophil count has rebounded fabulously - she is no longer neutropaenic. When she starts to get better, she gets better quickly.
The anonymous voice in the lift could have been talking about Maddy as easily as describing the lift's direction.
The best line though, came from the girl herself when, describing the experience of dealing with the dreaded COPADM cycles of her chemo protocol, now falling behind her, she said, "That wasn't too bad,....I was expecting something much worse.....".
Perhaps her memory is failing - unlike Julie's; she just dropped her head into her hands at the shock of what she'd just heard.
You've got to admire the spirit though.
Anyone remember the Black Knight sketch from Monty Python & the Holy Grail ?

Visitors

.....seem to make a significant difference to how our patient feels.
Ever present mum, Julie, is starting to feel that no-body else ever sees Maddy in one of her dips. Julie notes that, around the time of a visit, Maddy invariably perks up and her demeanour brightens noticeably.
Maddy started a new course of antibiotics today that will result in her staying at Jimmy's until Friday, at least, and possibly quiet a bit longer than that. As she comes through the nadir of the current cycle over the rest of this week, she should start to feel better.
This suggests that the next few days or so are probably a good time to visit.

If you'd like to visit Maddy at Jimmy's, why not give Julie a call on 0773 0921720 to plan a suitable time/date ?

One note of caution though.
Please, if you have any sort of cough, cold or sneezing or (and this is particularly important) - if you have come into contact with chickenpox in any way - please wait until you are entirely confident that you are fit and well. Even though Maddy should be out of her neutropaenia (high susceptibility to infection) very shortly, we need to be vigilant on behalf of other patients on the ward.

Thanks for your understanding on this issue.

Connections

It seems important not to lose perspective here.
Recognising what's going on in the big wide world outside Ward 10 of St James's Hospital, Leeds can be quite therapeutic and the events of Saturday were certainly signifiacnt for the big wide world.
Is there a connection between Maddy's situation and all the Live8 / G8 issues ?
Absolutely.
Nobody who gets cancer can consider themselves lucky.
Whoever you are, whatever type of cancer it is, whenever it hits you - it's a rough deal and a really tough experience.
However, if you have cancer, then it's certainly fortunate if it can be treated somewhere like Jimmy's with the fabulous NHS machine behind it.
It's very reassuring and it means that Maddy has the best possible chance of pulling through.

It's a miserable reality however, that the picture is very different in other parts of the world, particularly in much of Africa, where people in Maddy's situation aren't getting the best possible chance with their treatments. Some forms of lymphoma are much more common across Africa, but survival rates are significantly lower.
".....the majority of children with malignancies in Africa can be cured with current standard treatment protocols, though survival rates are consistently below those in the West." (The Provision and outcome of Paediatric Oncology Care in Sub-Saharan Africa, Abby White)
"Equitable distribution of resources is an important ethical concern in cancer treatment. It is clear that, in Zimbabwe at least, and probably in much of the continent, there is plenty of scope for improvement in this respect." (Cancer survival in Africa, David Greenberg)

To paraphrase Bono from the Hyde park gig on Saturday - it's not about charity, it's about justice.


Meanwhile, back on Ward 10, Maddy is dealing with her own connections.
She has had to deal with a record number of connections to her drip machine over the last few days - for: blood, electrolytes, nutrition (TPN), anti-sickness drugs, painkillers, antibiotics and hydration (saline)....just about everything except chemotherapy

. As of today, she has been freed from two of that list, blood and electrolytes, but she is still very well 'connected'.

The boys of the family visited for the early (11.45 !) Sunday lunch today and stayed until mid-afternoon. Most of that time, Maddy was OK, but she does dip quite suddenly and unexpectedly - her BP still seems volatile and sudden changes for the worse can make her very drowsy.
Beth, Martha, May & Nigel are visiting around tea-time today.
Karen is scheduled for tomorrow teatime.

Today's flowers are courtesy of Gemma, Jamie and the Watts family of Formby, Nr Liverpool.