Sore Mouth

Apologies for the near 2 day delay in news, but it has been rather frantic trying to keep up with the normal routine on top of everything else - Saturday morning is dance, football and swimming - all before lunch.
We (Bob, Bertie, Chris, Nigel & Gem) visited last night. Maddy was quiet (said nothing in fact - how unusual I can hear you thinking !). She is really fed up with the state of her mouth.
We did manage some 'chat' though, using hand signals and some acerbic scribblings from Maddy in her notebook - mostly aimed at Bob. Some things never change.
She is being fed by Hyperalimentation (aka TPN) for the duration of her stay this instance - probably 5 or 6 days. This takes some pressure off Julie trying to coax Maddy to eat all the time.
Karen's visiting this afternoon and Chris and the boys will be at St J's for Sunday lunch. When she gets home around the middle of next week, she should be feeling better and may well be interested in visitors at home, say Thursday/Friday.
Call or text Maddy, Julie or Chris to discuss over the next few days.

Infection

I think we're all relieved that Maddy's in the right place for treatment for her infection and that it has been dealt with promptly. She will probably stay in St J's for about 5 days or so - she may get home again on Tuesday or perhaps Wednesday of next week.
She's also getting better pain relief for her sore mouth that she can control directly, so she had a more comfortable day today.

You might also notice that I'm getting the hang of this blogging thing as I include more links and.....hey.....

...............pictures too.

This first one's of Maddy as most of you'll recall her...laughing and smiling....
The second one's a hospital shot (during her first stay in mid-May..)

Not fabulous quality as they were taken on a camera 'phone - we'll get some better ones later...
One further change to the blog - you now don't have to be registered to post comments on the blog - please feel free to do so.
Bob, Bertie & Chris plus possible neighbours, will visit tomorrow early evening.

Back to hospital....eventually.

Well, quite an eventful day in all. We were initially half right with our predictions and ultimately 100% right.
Maddy had her IT OK, but as anticipated she didn't have the feed tube replaced due to her very sore mouth and throat. She did come home though, albeit just for 7 hours, when a temperature combined with the knowledge that she is neutropenic prompted a return to St James's as she is very prone to infection in this condition. She will probably stay in Leeds for about 5 days for a course of antibiotics.
She is very sick now, unsurprisingly as she is well into the nadir of the side effects of her second cycle of chemo. Her mouth and throat is worst hit, depressing her appetite, but she is still drinking.
Talk has almost disappeared, but her sign language is becoming quite sophisticated. This all sounds a bit tough perhaps, but these symptoms should diminish next week as she recovers.

Weds 15 June.
Bit stressful this morning as Maddy had a very sore mouth and throat - she couldn't talk very easily and eating and drinking also seemed very difficult. She's returning to St J's for another (her third) IT (intrathecal). This is a chemo injection directly into the spinal column fluid, done under general anaesthtic. She was also expected to have her feeding tube replaced, although in light of the state of her mouth and throat, we suspect this may not happen now.
In theory, she should be able to come home again as she's only in St J's as a day patient, but we reckon there's a fair chance she may be admitted tonight because of these other problems.

Maddy's been home for 24 hours now.
Everyone (well almost everyone !) seems to want to know how long she'll be at home for.

In short, we just don't know.
This is because she may have to return to St James's for unplanned visits if/when she gets an infection.
Also, her consultant is not sticking to a rigid application of the treatment protocol, but will seek to readmit her as soon as she's fit enough to cope with the next cycle.
This means that the treatment will be even tougher for Maddy as she'll have less respite between cycles. However, the whole treatment period should be shorter and, according to results from clinical trials, should help secure a better outcome.