To see Guy's Donation Box in action, click this link http://www.youtube.com/watch?v=YKrEKAyi9gw
Monday, 14 November 2011
Saturday, 5 November 2011
Valjee - from Cornwall, UK
It is with very great sadness that I must tell you that Valerie Mutton died on Thursday night. She was an amazing fighter whom I met on the CCF boards & was lucky enough to meet in person to celebrate her 50th birthday last year. Dearest Val, I don't know how I would have got through the last 2 years without you & your wonderful strength & humour. Rest In Peace, dear Val. XXX
Monday, 31 October 2011
Back In Guy's Hospital
They've drained 9 litres of ascites from her abdominal cavity since Tuesday & think there may still be a couple more litres to drain out over the next day or so.
She's lost just under 3 stone in the 5 days she's been draining.
She's lost just under 3 stone in the 5 days she's been draining.
Wednesday, 26 October 2011
Thursday, 29 September 2011
Belated Update
It's been quite a rollercoaster summer (& I'm not talking about the weather ...) but we are both doing well. Actually, we're both doing VERY well, given the circumstances.
I'll update properly soon :-)
I'll update properly soon :-)
Thursday, 14 July 2011
ERCP & After
After the scan & bloods were analysed, the Onc decided to proceed with an ERCP (camera down the throat & into the bile ducts ...) to see if there was any issue with the placing or condition of the stents.
We were told it would be a day-procedure, but I could have told them it would be a longer stay than that. Last time they had to fiddle with her stents, she was very ill indeed. This time wasn't so bad, but she still had to stay in overnight. Her lovely friend, Paul, took her in, stayed with her pre-&-post procedure & returned to collect her & bring her home the next day.
Since then, she's slept about 22 hours a day. It may be post-Chemo or post-ERCP fatigue, but it's very distressing for us both. I go into hospital for my 2nd TKR (total knee replacement) on Monday & she wants to stay here during my hospital stay & subsequent convalescence. I'm dreading leaving her here alone whilst she's so incapacitated.
Hopefully, she & her Mac Nurse (Dorothy) can come to some arrangement, which will reassure me & keep Susan's independence. I think Dorothy's due to visit again tomorrow.
We were told it would be a day-procedure, but I could have told them it would be a longer stay than that. Last time they had to fiddle with her stents, she was very ill indeed. This time wasn't so bad, but she still had to stay in overnight. Her lovely friend, Paul, took her in, stayed with her pre-&-post procedure & returned to collect her & bring her home the next day.
Since then, she's slept about 22 hours a day. It may be post-Chemo or post-ERCP fatigue, but it's very distressing for us both. I go into hospital for my 2nd TKR (total knee replacement) on Monday & she wants to stay here during my hospital stay & subsequent convalescence. I'm dreading leaving her here alone whilst she's so incapacitated.
Hopefully, she & her Mac Nurse (Dorothy) can come to some arrangement, which will reassure me & keep Susan's independence. I think Dorothy's due to visit again tomorrow.
Monday, 13 June 2011
CHEMO FINISHED :-D
We were the last to be seen, having waited 2 hours beyond her appointed time - but it was worth waiting.
After hearing about Sue's recent infection, the Onc suggested she stop Chemo now. She said 7 Cycles is good & missing the 8th won't compromise the benefits she's already received from the treatment - so stop now & let her body recover.
The Onc is sure the infections which keep clobbering Sue are coming from the stent, internally, rather than being picked up from outside. The Onc Team will talk to the Gastro Team to compare the North Mid's latest scan with Guy's previous scans & see if the stent needs changing. (Metal stents can't actually be changed, but they can be looked at, & cleaned/expanded as necessary.)
Now she's off Chemo, she's at less risk of these sudden, violent infections, although not totally risk-free. Once the stent's checked & sorted, the risk will reduce even further.
We'll know more in 2 weeks, when blood & scan results have been assessed by the Oncs, but tonight we can celebrate the start of a new period of stability.
After hearing about Sue's recent infection, the Onc suggested she stop Chemo now. She said 7 Cycles is good & missing the 8th won't compromise the benefits she's already received from the treatment - so stop now & let her body recover.
The Onc is sure the infections which keep clobbering Sue are coming from the stent, internally, rather than being picked up from outside. The Onc Team will talk to the Gastro Team to compare the North Mid's latest scan with Guy's previous scans & see if the stent needs changing. (Metal stents can't actually be changed, but they can be looked at, & cleaned/expanded as necessary.)
Now she's off Chemo, she's at less risk of these sudden, violent infections, although not totally risk-free. Once the stent's checked & sorted, the risk will reduce even further.
We'll know more in 2 weeks, when blood & scan results have been assessed by the Oncs, but tonight we can celebrate the start of a new period of stability.
Pre-Cycle 8 Onc Visit
I left Sue at the coffee bar when we got to Guy's, so she could get checked in, whilst I got the drinks (tea for me & freshly-squose orange juice for her - lol). By the time I got into Onc Outpatients, she'd already had her bloods taken & was off to be weighed!! Blimey, considering how long it took 2 phlebotomists to take blood from 10 patients last month, I was pretty gobsmacked.
However ... the speed of the pre-Onc tests has been no indicator of the clinic's turnover rate ... we're now an hour past her allotted appointment time & no sign of being called in yet ...
However ... the speed of the pre-Onc tests has been no indicator of the clinic's turnover rate ... we're now an hour past her allotted appointment time & no sign of being called in yet ...
Saturday, 11 June 2011
Home & Feeling Better
Susan came out on Wednesday afternoon, after a week in side room in the North Mid. For the last night, she'd been relegated back to the Tower, where she'd been for the whole of her 1st Norovirus episode. Fortunately, it wasn't such an awful experience for her this time.
When mum & I collected her, I really believed she wasn't well enough to come home, but after 24 hours' total disorientation, my lovely sister started to resurface from the shell of the seriously ill person she'd been.
She's watching a morning of back-to-back Time Team episodes in the other room now & life's getting back to our "new normal" ... Welcome Home, Sue ;)
When mum & I collected her, I really believed she wasn't well enough to come home, but after 24 hours' total disorientation, my lovely sister started to resurface from the shell of the seriously ill person she'd been.
She's watching a morning of back-to-back Time Team episodes in the other room now & life's getting back to our "new normal" ... Welcome Home, Sue ;)
Saturday, 4 June 2011
Friday, 3 June 2011
Thursday, 2 June 2011
LATER ...
They've decided to keep her in for at least one more night, as her blood pressure is so low. She's in a side room "for her own protection"; she'll hate that.
They're being incredibly thorough. Before I left this morning, they took her off the saline drip & put her on a mix of saline & potassium, as her potassium level was quite low. Then, this morning, they gave her a CT Scan & got in touch with Guy's Onc Dept. If Guy's want her transferred to them, North Mid will arrange it.
They're doubting it's a bacterial infection on this occasion but are suspecting either a reaction to last week's Chemo, or our old friend the Norovirus.
I'm SOOOO DIZZY!! I got home at 06:30 this morning & managed to sleep until 10:00 but I feel totally jet-lagged. Still, I always feel hospitals are foreign countries - with A&E Depts being on another planet entirely - so it's not really surprising.
They're being incredibly thorough. Before I left this morning, they took her off the saline drip & put her on a mix of saline & potassium, as her potassium level was quite low. Then, this morning, they gave her a CT Scan & got in touch with Guy's Onc Dept. If Guy's want her transferred to them, North Mid will arrange it.
They're doubting it's a bacterial infection on this occasion but are suspecting either a reaction to last week's Chemo, or our old friend the Norovirus.
I'm SOOOO DIZZY!! I got home at 06:30 this morning & managed to sleep until 10:00 but I feel totally jet-lagged. Still, I always feel hospitals are foreign countries - with A&E Depts being on another planet entirely - so it's not really surprising.
Day 21: Cycle 7
Another spiking fever - her temperature shot up to 40.3 from a standing start in less time than it's taken me to type this. I woke to the sound of retching at 01:00 this morning & found her lying in vomit. It took me no time at all to call out the cavalry & get her to A&E.
It's 02:45 now; Susan's on an antibiotic drip at the North Middlesex Hospital with her temperature starting to come down; I'm surprisingly awake for having had only 1.5 hours sleep ... & 2 more paramedics are patrolling north London wearing CC wristbands.
It's 02:45 now; Susan's on an antibiotic drip at the North Middlesex Hospital with her temperature starting to come down; I'm surprisingly awake for having had only 1.5 hours sleep ... & 2 more paramedics are patrolling north London wearing CC wristbands.
Thursday, 19 May 2011
Cycle 7 has started
It's only a week late, but it feels so much longer.
Sue wasn't feeling well this morning, but her bloods were "normal" (i.e. within acceptable limits) & the Chemo Unit said it was okay if she went in later, so she rested a bit more & then made her way to Guy's at London Bridge.
This is the penultimate cycle - & it's finally started :-)
Only one more cycle after this one :-)
Keep going, my lovely sis - you're doing soooo well & I'm soooo proud of you!!
Sue wasn't feeling well this morning, but her bloods were "normal" (i.e. within acceptable limits) & the Chemo Unit said it was okay if she went in later, so she rested a bit more & then made her way to Guy's at London Bridge.
This is the penultimate cycle - & it's finally started :-)
Only one more cycle after this one :-)
Keep going, my lovely sis - you're doing soooo well & I'm soooo proud of you!!
Cycle 7: Day 1?
Susan's still not feeling well. I think she's been jolted by the low blood count diagnosis, too. Her white cells have never been a problem before.
Not sure if Cycle 7 will start today or be further delayed.
Will post later.
Not sure if Cycle 7 will start today or be further delayed.
Will post later.
Monday, 16 May 2011
A Further Postponement
The hospital says Susan's "little soldiers" (I assume they're referring to her white blood cells) aren't functioning properly, so they're still reluctant to drip more toxins into her. They reckon a few more days should see her right, so she's going back for a further blood test on Wednesday, with a view to restarting Chemo on Thursday.
This morning she thought that any further delay would mean her treatment would never end, but now she's acknowledging that it's simply put the Chemo end-date back by (another) week.
She's coping well :)
This morning she thought that any further delay would mean her treatment would never end, but now she's acknowledging that it's simply put the Chemo end-date back by (another) week.
She's coping well :)
Thursday, 12 May 2011
Cycle 7 Postponed
She went to Guy's yesterday to start her penultimate cycle, but they've put it off until Monday, as she has another infection. She's back on antibiotics, so that should sort it out fairly quickly, but the delay has put her end-of-Chemo-&-Big-Birthday celebrations back yet again, which is upsetting for her.
On Monday, the Onc talked about putting her on a permanent low-dose prophylactic course of antibiotics to stop the constant infections. They don't want her to keep having to rush (or be rushed) to A&E either; they want to keep her from getting hospital-acquired infections in addition to the normal low-immunity acquired ones!! Oh blummin' 'eck!! - being treated has as many dangers as NOT being treated!!
On Monday, the Onc talked about putting her on a permanent low-dose prophylactic course of antibiotics to stop the constant infections. They don't want her to keep having to rush (or be rushed) to A&E either; they want to keep her from getting hospital-acquired infections in addition to the normal low-immunity acquired ones!! Oh blummin' 'eck!! - being treated has as many dangers as NOT being treated!!
Monday, 9 May 2011
Pre-Cycle 7 Check-Up
Nice, chilled journey to the Onc, as we had enough time to get the local Overground train (empty at this time of day), rather than playing sardines on the tube - lol.
We've had so many Bank Holidays recently that there are signs all over the place, warning that this afternoon's clinic is packed to the gills. Since it's usually a 1-2 hour wait on a "quiet" day, I dread to anticipate the wait we'll have today.
The odd thing is, there aren't actually very many people here but the Blood Test counter is moving sooooo slooooowly.
Sue's awaiting sign-off for Cycle 7, but it seems WEEKS since Cycle 6 ended. She's had a rough time this week but is looking much better &, overall, is feeling much stronger these days. The Chemo effect is really cumulative, though & she gets so, so tired really quickly.
We're all really looking forward to the end of this course of Chemo &, hopefully to my lovely sister having a GOOD length of time feeling well - & having a laff - again.
********************
It's been an hour's wait up to now & she still hasn't reached the top of the Bloods list!! There are 2 people taking blood - how can they take an hour to extract samples from 10 people??
We've had so many Bank Holidays recently that there are signs all over the place, warning that this afternoon's clinic is packed to the gills. Since it's usually a 1-2 hour wait on a "quiet" day, I dread to anticipate the wait we'll have today.
The odd thing is, there aren't actually very many people here but the Blood Test counter is moving sooooo slooooowly.
Sue's awaiting sign-off for Cycle 7, but it seems WEEKS since Cycle 6 ended. She's had a rough time this week but is looking much better &, overall, is feeling much stronger these days. The Chemo effect is really cumulative, though & she gets so, so tired really quickly.
We're all really looking forward to the end of this course of Chemo &, hopefully to my lovely sister having a GOOD length of time feeling well - & having a laff - again.
********************
It's been an hour's wait up to now & she still hasn't reached the top of the Bloods list!! There are 2 people taking blood - how can they take an hour to extract samples from 10 people??
Thursday, 5 May 2011
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