I went to have my monthly IV-IG infusion yesterday. The nurses always do blood tests before they start, and I was pretty pleased to see that my WCC and neutrofils had come back into the normal range! They'd been down for the past couple of months ...
WCC - 4.4 (normal range 4.0 - 11.0)
Neutrophils - 2.6 (2.0 - 8.0)
Platelets - 123 (150 - 450)
Platelets are still down but they may well always be down! In fact, looking at the previous post they were exactly the same then (July)!!
I'm seeing Dr B again next month before the December infusion. He's ordered up some extra blood tests that I'll get done before I go and see him. Hopefully all will be well! :)
However, I should note that it's actually 4.00am right now! I am not sure that I have slept at all - if I did it was only for 15 minutes here and there! I'm feeling OK at the moment but I don't expect I will by the end of the work day ... sigh! I'm wondering if this is because of one of the drugs they give me prior to the infusion, to stop reactions. Some 'cortico steroid'? Does that sound right? Who knows ... ! Anyway, I think I'm going to refuse to have this drug again next time. I really don't like tossing and turning all night! I'll see what the doctor says at least!
A couple of days ago it was the Melbourne Cup - the (horse) 'race that stops the nation'! It's one of those things like the Grand National in England. Everyone at work has Melbourne Cup lunches, wears silly hats and gets big TVs in to watch the race at work! And then there are the sweeps. You know - you put in $1, $2, $5 (whatever the amount for that sweep) and you are randomly assigned a horse. Well, one of the young IT Helpdesk guys was persuaded to set 2-3 of these these up for our department, despite protestations that he didn't know how to. So he spent I would estimate at least a day setting up these complex Excel spreadsheets that would randomly assign a horse to a person. And then we discovered after the race that he hadn't realised that he had to 'fill' each sweep! And there was at least one sweep where the winning horse hadn't been assigned to anyone!
I don't think he's ever going to live this down! I told the nurses and they all fell about laughing! At least he's ensured he won't be roped in to do this again next year!!
Thursday, November 5, 2009
Good blood test results, but no sleep!
Posted by
susiegb
at
4:12 AM
4
comments
Labels: blood test, hospital, NHL, work
Thursday, August 21, 2008
Portacath came out
This month another step away from being a cancer patient and back to normal life! My portacath was taken out on Thursday 7th August. Happened at the Wesley Hospital, same place where it was put in. Brisbane Private Hospital, ('my' hospital) being smaller and not having the advanced Radiology facilities to do this.
I had it done under twilight sedation, which I much prefer to full anaesthetic. Pretty simple - just half a day there. Then Lorraine came to collect me and drive me home, as I couldn't drive that day.
I think I probably had slightly under-estimated the effects this would have on me. I assumed it would be like the insertion, which was really easy. Or am I just not remembering it accurately? When I had it put in I went straight from there to the Brisbane Private Hospital, onto mabthera (rituxin), and then chemo the next morning. So there was a lot of new stuff going on!
Anyway, I was expecting a bit of pain/discomfort for a couple of days, and then nothing. So when it still hurt to touch 4-5 days after I began to wonder/worry. But having raised this on the Webmagic NHL board I heard lots of stories about discomfort/pain lasting for 2-3 months, so decided to stop worrying! After all, it'd been in there for 13 months, so it's bound to take a bit of time before it settles down.
And now it's 2 weeks since I had it removed. I've had all the stitches out and it's feeling a lot better. I don't really imagine it's going to be a problem at all ... :)
Posted by
susiegb
at
1:38 PM
2
comments
Thursday, October 11, 2007
Still in hospital ...
It's been a while since I last posted, and I'm still in hospital! I (or my white blood cells) have finally turned the corner, and I should be going home this weekend. Which will be about 4 weeks since I came in!!!
It's all been another one of those assumptions that because this is how it worked the last three times, then this is how it will always happen. Not!! In this case, that my white blood cells would fully recover a week after they 'crashed'. However, this time it took 2 weeks before they even showed up on the radar of blood tests!!
And in that 2 weeks I ran a temperature pretty much every day! Blood cultures were being taken every other day. I was being seen by an Infectious Diseases specialist who ended up telling me that despite all his tests, the temperatures/fevers would probably only be fixed when my white blood cell count came up. At which point he'd take the credit!! (We both laughed!!)
Add in some other unpleasant side effects of chemo that I'm not going to discuss in 'polite company' (!) and I really felt like I was 'paying' for crowing about how I wasn't having any side effects to speak of earlier!! I know it doesn't work like that, but this time has certainly been much harder than the previous three.
However, I've been so happy since yesterday morning when my blood counts started moving up! Which of course meant all the other side effects started getting better etc. Really shows you where you'd be without them! (Up sh*t creek without a paddle!!)
They're still hoping to do the stem cell recovery procedure, but it depends on whether enough stem cells show up. Apparently because of the length of time this has all taken, it just may not be possible, in which case we'd go for it next time I expect. There weren't enough today - I think a decision may be made tomorrow on that ...
I'll post again from home ... :)
Posted by
susiegb
at
3:07 PM
3
comments
Sunday, September 30, 2007
Waiting for the stem cells ...
Well, can't say it's been the best 3-4 days ... I got the inevitable infection on Thursday and this time it was a bit worse than previous ones. I ended up staying in bed all day - something I've religiously avoided doing to date!! Normally won't even lie down on it for an afternoon nap or anything, in case anyone thinks I'm sick (!!!)
I've been OK since then, though a bit tired, and of course on 2 antibiotics + saline hooked up to the Baxter drip machine. But I think I'm also starting to get the side-effects of the neupagin (sp?) which is the drug they give me twice a day to stimulate stem cell production. Like night-sweats!! Oh well ... won't be having that for much longer.
Tomorrow (Monday) I get a special blood test to see if there are enough stem cells in my blood yet. I really hope so! The procedure has to be done over two days, so there'd be no chance of going home on Wednesday if the procedure can't start on Monday!! But of course, I have no control here ... sigh!! :)
Today Wendi came in and we spent hours with her telling me about the event with Maharaji, and friends back in the UK, Portugal everywhere! And talking about what we might do when I'm at home with her. Nothing too tiring, but probably to include some gardening, and cooking. Wendi is a wonderful cook - in fact she does a lot of catering for live-in yoga retreats in the Algarve, where she lives! And if I'm feeling OK/up to it, we may go down to Byron Bay for a couple of days too ... just have to see how I feel and what we both want to do!
We were going to go to Morocco next year but it'll have to be put back till the following year I'm afraid - definitely won't have enough money next year! But it'll be something to look forward to ...
Sunday, September 23, 2007
Internet connections ...
Well, it's been a few days ... But I guess it was a bit of - same old chemo stuff last week! And then, my wonderful (check the sarcasm here!) 28K dial-up connection decided to stop working on Friday! Well, I have complained about the speed (???!?) but really I felt so disconnected with no internet at all! I managed to get on once on Friday night (having been trying off and on all day) and not at all on Saturday. And of course on Friday night I thought - oh, it's all OK now, just a telephone fault. So I never wrote down useful phone numbers I could use to ring up and ask what was happening if I couldn't get connected again, so I was cursing myself on Saturday!! Then today (Sunday) I went out for lunch and stuff with a friend and when I came back was going to watch a DVD but thought I'd give it one try ... and here I am. I have emailed loud 'what is going on' messages, and written down useful phone numbers to use tomorrow if necessary!!
Of course I'd been convinced I'd have all these really important emails waiting for me but there wasn't really anything in particular - just stuff from Amazon and even one from Purple Valley Yoga Goa - haven't heard from them for ages, and have never been there ... But it's nice to read about it!! :)
Today I started having the injections to encourage the production of stem cells - twice a day until there are enough to collect, which will probably start next Sunday or Monday. Apparently although they'd rather not do it on the weekend, the timing is driven by the quantity of stem cells in my blood, not their convenience!! Which is good!!
Yesterday my wonderful friend Wendi arrived from Portugal. She's going to the event with Maharaji next week (which I had thought I would be able to get to, until my dates slipped and I was shown I wasn't in control here!) and then will stay for the next period I'm out of hospital, which will be a long one (10 days or so). It was so wonderful to see her - she is staying in my house, with another friend from Byron (Bay) and has also collected my car. I'm not expecting to see her again till next weekend - it's over an hour's drive away and after a long day at the event it'd be crazy to try and drive in to see me. But we'll talk/text on the phone and she can regale me with the day's happenings ...
Sunday, September 9, 2007
you just can't be good all the time!
This past week is the one where I hang around waiting for my white blood cell count to recover and hope I don't get an infection again while my immune system is pretty much non-existent. So on Thursday I noticed that my forehead felt a bit hot - probably a temperature, sigh! Then I thought - well, I've got some paracetemol here and that brings down a temperature so maybe if I just take that this will fix it(?!?!?!!!) So I did - always intending to tell the nurse when she came round to do the 'obs' (observations - blood pressure, oxygen level in blood and temperature).
She came, and couldn't figure out what my temperature was doing. I told her I'd taken some paracetemol and there was much shaking of heads and stuff and she went off to get the sister (not called that any more but still the head honcho nurse!) She promptly put a thermometer in my mouth and then proceeded to give me another big lecture -saying she knew I wouldn't be able to talk back with the thermometer there!! What I was doing of course was just masking the temperature. And now they'd have to wait till the paracetemol wore off before they could get a real handle on my infection situation, and probably start me on the antiobiotics. So - I had to apologise, but told her I just couldn't be good all the time!! And when the doctor came round the next morning, he wasn't too bothered about it, and thought what I'd said was quite amusing!!
It was all very good natured but I do realise I was being a complete idiot. I guess I've learnt my lesson now. I've never taken paracetemol here without asking them before - I probably got influenced by one of the nurses telling me then that I was good to ask as most people didn't. But that would have been for a headache, not to try and bring down a fever!!
So anyway, it was back on the drip machine (which was what I was really trying to avoid) plus antibiotics, and that's where I am now. But this time I haven't been freaked out about it like last time - I guess I'm just getting more accepting of stuff! And I'm still hoping I'll get to go home on Tuesday as my white blood cells are on the way up ... we shall see! This time it'll just be till the following Monday, but the next time my friend Wendi is coming over from Portugal to visit me (as well as to go to an event with Maharaji, which I would also have gone to if my treatment dates hadn't slipped!). And I'll have 10 or so days with her which will be wonderful!!
Posted by
susiegb
at
11:24 AM
1 comments
Tuesday, September 4, 2007
Yummy vegetarian recipes blog
Someone sent me the link to this site - Dinner Daily
She's a woman from Melbourne (Australia) who writes up a list of dinner recipes for the coming week, plus shopping list, plus photos! They look/sound really yummy to me, and having the shopping list is great!!
I've been amusing myself this week (in hospital) by buying clothes on eBay! On Saturday I was allowed out (all current chemo having finished, and white blood cells still in abundance, although not for long!) and walked down into the centre of Brisbane to have a look at the shops. Haven't done that for ages. It was fun, but the clothes are all soo expensive - there's obviously been a big upmarket push there! I only managed to stop myself buying a teeshirt for $129 because I realised I had nothing at home that I could wear with it!!! So I got a taxi back (well, it is up a big hill!) and went ebay shopping ... I've got some really nice clothes on ebay in the past - hopefully the 3 things I won will be the same! However, I can tell everyone that it's not easy doing anything like this on a 28K dialup connection. Still haven't managed to pay for the last pair of pants yet ... !
Wednesday, August 29, 2007
Really good news!
I think I said before I've had a couple of tests to see how the treatment is progressing - a bone marrow biopsy and a CAT scan. Well the results of the bone marrow biopsy showed that it was completely clear - hoorrayy! To be honest, that was one of the scariest things about getting this disease - being told that the lymphoma was in my bone marrow!! And the CAT scan showed just a few small glands left. The doctor is very pleased with my progress.
He's going to do a stem cell collection at the end of my next treatment. What this is is bone marrow stem cells, but fortunately they can be collected from blood, don't have to go into the bone marrow directly any more. I'll get given some drug every day for a few days after the actual chemo is finished, to stimulate bone marrow cell creation, and then they collect it (via my blood) over 2-3 days. Then the blood gets separated and (I think) put back into me?! And the stem cells are frozen and stored somewhere safely so that if the lymphoma comes back at some time in the future, I will be able to have them transfused back into me.
Just wanted to share that with everyone!! :)
Posted by
susiegb
at
4:47 PM
5
comments
Sunday, August 26, 2007
One third through!
After a really nice 10 days at home, I'm off back to hospital tomorrow morning. And I'm a third of the way through the treatment - hoorrayy!!
It's funny - this time at home I've felt much better and stronger than I did last time. I would have thought it'd have been the other way round - ie. feeling less and less strong as I went. I do wonder if it's to do with the fact that on the first treatment I was having heavy doses of steroids, but none in the second treatment. We shall see I guess - when I go back it's back to the first treatment again ...
I got my mat out and did a little bit of yoga too. But I could only get as far as trikonasana - was just too tired to do more!! (And I didn't do Surya Namaskara B either - I knew that'd be too much!) So that shows that no matter how I think I'm feeling, my energy levels are way wayy down! Strength? What strength!! It's all an illusion!!
Posted by
susiegb
at
5:16 PM
4
comments
Monday, August 13, 2007
Things are looking up!
Have been in a much more cheerful mood for the last 2-3 days - probably since I had a good night's sleep actually!! My white blood count is slowly on the upward move, although the all-important neutrophyls are moving a bit slower. But the doctor said this morning that I should be able to go home tomorrow or Wednesday (depending on neutrophyl results). So that's great. He's also got me disconnected from the drip - just have to have it connected when I get the last of the antibiotics. I also got given some Vitamin K today. Anyone know what this is for I wonder? The nurse didn't!! I wonder where it comes from naturally?
The doctor also said I was doing very well treatment-wise! And that I won't be expected back until the 27th - well, two weeks from today.
I've decided I'm going to wait till I get home and feel stronger before I try any yoga. The past few days I couldn't because of being attached to the drip, and now I just feel this is the best way to go.
Posted by
susiegb
at
11:45 AM
2
comments
Friday, August 10, 2007
That which was predicted has come to pass
I got a fever on Wednesday - temperature of 38.4degC. Don't know what that is in Fahrenheit but it's high - anything from 38C they take immediate action on here. So they took blood to see if they could grow anything (!) and started me on these heavy-duty antibiotics - sigh! And I'm attached to a drip again till the antibiotics finish (midnight on Sunday!) Big sigh - I can cope with having to wheel my drip machine around with me in the first week because I know it's going to stop at the end of the chemo! Now I'm hooked up again for 5 days - I do miss my 'freedom'!
Not that it affected me in any obvious way except I was very tired for a couple of days. Well, actually I'm still tired! Have had to have 2 platelets transfusions, and blood too. (I was getting a nosebleed - I've never had nosebleeds before!)
And of course, they always said there was a possibility this might happen in the 2nd week. That's why they keep me in hospital for this week, so if anything happens they can act straight away. I can of course see that there i also a possibility I may have to stay in hospital for a day or so longer - but maybe not. I am much more relaxed about it all now!
Anyway, I'm still overall cheerful, but a bit quiet at the moment! And totally sick of all the chemical food supplement drinks they keep trying to make me have. I've spat the dummy and refused to have any today!! Instead a friend brought in some cream for me last night and I had porridge with lashings of cream for breakfast! And I'll put it in the potato & leek soup that I think is coming at dinner time too! :)
Posted by
susiegb
at
4:51 PM
4
comments
Wednesday, August 8, 2007
I have to eat so much!
A couple of years ago I lost 30K at Weightwatchers - the impetus to finally do something about my weight after having been overweight for 20+ years was yoga! I just couldn't do Marichyasana A (let alone any of the others)! It was fantastic - really worked for me!
But now I'm finding myself in the extraordinary situation of having to eat like a pig - MUCH more than I normally eat, and I'm still losing weight!! The dietician came to see me today and she told me that in Weightwatchers terms, I need to eat 30 points a day! Nearly double what I was eating when I was doing WW, and nearly a third more than I normally eat now. Of course being vegetarian doesn't help (in her view) but I'm now being plied with all these medical protein drinks that contain about 600 calories each! Twice a day!! Plus protein powder into any (vegetarian) soups on offer!
Apart from the constant weight loss, this has also been highlighted by the fact that I have absolutely no b****side to sit on! And my coccyx is getting really paintful I guess I never really addressed this after I finished at WW - anyone have any thoughts on exerrcises to build up muscles in one's backside?
I'm also neutropenic now - meaning I'm open to any infections that are around! Of course this winter is being a particularly bad flu season so I'm having to hope I don't get struck down with that. But I' guess they'll be right onto it as soon as my temperature goes over 38degC.
Yoga - I'm still feeling a bit 'slow' so haven't made an effort yet. I have to remember what the priority really is here ... :) But maybe I'll have a look at the David Swenson dvd and see if there is a short practice that I feel I could attempt - in the next day or two!
Sunday, August 5, 2007
Lazy Sunday ...
It's a(nother) sunny winter Brisbane day - 21degC, brilliant blue skies. As seen from my hospital room window ... Today I have been 'untethered' from all IV drips and so am free to go outside. A friend is coming this afternoon I think and we may go out for coffee! Seems funny to be going out for coffee from hospital! But it will be nice! I know that by Tuesday my immune system will be crashing again and so I won't be allowed to leave the ward floor for fear of infection, so I want to make the most of it.
Although the doctor did say that if I go for a walk in the park I mustn't smell or touch any flowers or foliage. Apparently they're full of fungus!!
Chemo finished on Friday night - and th anti-nausea drugs yesterday. I am glad about that - they do bung you up at both ends!!
And in the next couple of days I will think about doing some yoga here ...
Last night Ross came over and we had a DVD-viewing night on my laptop! We watched Monty Pythons' The Meaning of Life. I'd somehow never seen that before - we laughed madly but god some of it was gross! And I can't imagine how they got away with having young children singing about God loving every little sperm back in the mid-80s!!! And as for the infamous restaurant scene - I really think that the Little Britain guys must have remembered that when they created their 'peeing lady'!!!
Then Ross said he could bring over the Borat movie. Absolutely NO!!! I did see that in the cinema with a couple of friends - just appalling! You couldn't help laughing your head off,, but you were (I was) completely embarrassed to be laughing!!!
I'm going back to Price and Prejudice!!! :)
Posted by
susiegb
at
10:54 AM
0
comments
Wednesday, August 1, 2007
Back in hospital ...
Well, had a nice quiet few days at home and came back to hospital on Monday. There was some question over whether I'd be sent home for another week as my blood levels hadn't recovered as much as expected, but in the end the doctor felt that they might still be lowish, so we might as well carry on. All it means is that there is a slightly higher chance that I may get a fever/infection next week when my immune system goes down. But as I'll be here in hospital, they'll be able to jump on that and fix it anyway.
The treatment I'm getting is sort of in two parts. And this 2nd part is the one that targets the bone marrow more anyway, so it's better to do the two treatments close together as planned, and if necessary there may be a longer gap (2 weeks) before I start again on the first part of the 2nd cycle.
Anyway, chemo is dripping into me (pale yellow, rather disgusting!!) as I speak - and I guess it or something continues for the next 3-4 days.
I never did any yoga while I was at home. But I've brought my mat in here and am planning to do some practice next week. I've also brought in a couple of yoga dvds - watched Ashtanga NY yesterday. Whenever I watch that I look at the women who are interviewed, and wonder whether one of them is the infamous Rosebud from the Ashtanga discussion board - she of the ascerbic comments! (I am NOT, of course, including Gwynneth Paltrow as a possibility!!!)
I've got the David Swenson one too - am planning to try and practice to that. I've never done that before - practiced with a video or dvd, so have no idea how I'll find that.
Another dvd I brought in was the wonderful BBC version of Pride and Prejudice - think Colin Firth emerging from the lake in a wet shirt !!! Even I can appreciate that! I'm trying to make myself only watch one episode a day!!
I've also remembered to bring in my Keys dvds which I'm looking forward to watching ...
Can't think of anything else - now I'm back here I'm bound to be blogging a bit more frequently than last week ... :)
Posted by
susiegb
at
10:36 AM
1 comments
Monday, July 23, 2007
Not going home today after all ... :(
Sadly, although my white blood cell count is on the way up, my platelets are still down, and the doctor thinks I might be at risk of infection if he lets me go home today ... So I'm going to have a platelets transfusion today and hopefully tomorrow I can escape (80% chance he says!)
Not that I'd have tried to push it or anything - I'm always going to do whatever I have to do to make sure I get through this in the best health possible. And like I said, I do trust him - not in the older generational way of thinking that doctors are god and their words are gospel, but I'm damn sure he knows an awful lot more about this than I do and has only my best interests at heart!!!
Of course this news wasn't helped by the fact that this morning in the shower I discovered my hair was starting to fall out! I knew (theoretically!) that it would happen, and that I would find it difficult - and now it has started ... sigh!! I've already gotten a wig to wear - length sort of halfway between my current shoulder-length hair and a very short cut. Covers my ears, and it did look really nice when the wig lady tried it on me last week. But ... just another big step on this journey I guess! Need to get hold of some beanies etc. Angela is going to lend me a very nice one that Doris (her mother) knitted for her. When it gets warmer again I'll probably experiment with scarves too ... but absolutely no turbans!!!
Actually, in the paper yesterday there was a photo of the two-woman fashion designers/ owners of Australian fashion label Sass & Bide. They're in their 30s I guess - and one of them is 2 months out of chemo for breast cancer, and had really short hair - probably only 1-2cm (I never know about No. 3s, 2s etc!! What is what!) She looked gorgeous. She is about 20 years younger than me, but still. It reminded me when I was a hippy in India in the 70s I met this amazing French hippy girl called Gypsy (!) who had shaved her head and also had a nose ring! I got a nose-ring just like hers, and was tempted by her shaved head, but probably more theoretically than actually!
Posted by
susiegb
at
10:46 AM
3
comments
Sunday, July 22, 2007
Lazy Sunday ...
Still sitting in the armchair in the window (should escape home tomorrow). Been reading the Saturday papers (Unlike in the UK, it's the Saturday papers in Oz that are huge with magazines and lots of sections, while the Sunday papers are utter crap!) And I'm listening to Charlotte Church (Welsh soprano) on my iPod - lovely!
My mum arrived on Friday from NSW, so she's been in here each day since then. Coming this afternoon. Hopefully we'll both drive off home to Kholo countryside tomorrow. Yesterday she and my aunt collected my pussy-cat Mieke (she who is sleeping on the ironing board in the photo on the right!) from the expensive cattery and took her home to Kholo, set her up with food, hidden entrance to the outside, where I'm sure she'll be much happier on her own for a couple of days!
On Friday night 3 friends from Woodford (annual music festival) came to visit. I really like them but somehow we don't usually see each other during the year, just come together in a big group to camp together for 8 days from Boxing Day, and to volunteer and/or enjoy the music and other amazing things that happen at the Woodford Folk Festival. We had such a great time on Friday evening, catching up on what everyone had been doing, and talking about this and that for hours. Had a great long conversation about that wonderful film The Queen (that Helen Mirren won the best actress Oscar in for her portrayal of Queen Elizabeth II during the week of Diana's death and funeral). That was one of the best films I've seen all year I think - the whole thing rang so true! And seeing those excerpts from the funeral again - so moving.
There was one thing that I remember striking me as utterly medieval during the actual TV coverage of the funeral (which I was of course locked onto that whole day 10 years ago!) And that was when the funeral car was taking her coffin out of London to where she would be buried. And thousands of people lining the route out of London, and throwing flowers down on the road in front of the car ... You just know people did that sort of thing back in the 1400s on occasions such as this!
Anyway - not much medical news to report (thank goodness!) My white blood cell count is rising though I don't know what/where it is. When the weekend doctor did her roundz yesteday and said 'any questions' I forgot to ask! But I will today!! I'm not expecting to go home today, but I am expecting to go tomorrow! (Hope I don't get disappointed!!))
Posted by
susiegb
at
11:37 AM
0
comments
Wednesday, July 18, 2007
Dignified ... ?!
I really like my doctor. He's human, but reserved. I think we're getting to know each other. I can make him laugh, and tell him interesting stories.
I wonder if this is a human thing - to try and 'seduce' people into liking you by leaking out bits of intriguing information?! Not saying this is a calculated thing, but I have observed myself interacting with him, from the beginning when he was distracted and flipping pages through my file (in the public hospital I started off in); to now when he comes into my room, and we talk about how it's all going. He saw some DVDs that a friend had brought in, a couple from the Woodford Folk Festival, and said he used to go to that years ago! I think of things I feel I need to tell him, or ask him. And the interaction has definitely changed. Not, I hasten to add, that I am expecting (or even wanting) us to be best friends or anything like that. But - I like him and I want him to like me ... (this could sound pathetic but it isn't, honest!!)
Anyway, we were talking about stuff, like not being frightened of cancer once you actually get it, and how different people take it etc. And he said that I had a very 'dignified' attitude to it all! Now, I could get upset at that. Who wants to be dignified? Sounds far too old to me!! But I understood what he meant!!
I'm now in the 'business' end of the current cycle. my white blood cells have dropped and I'm at risk of infection - no more going outside for walks in the winter sunshine! For the medical readers, my WCC have gone to 0.6, Neuts to 0.2 and lymphs are 0.4. Platelets are still decreased too. Tomorrow I get an injection that should stimulate the white blood cells to get going again. And then it's just a matter of waiting till the levels are high enough for it to be safe for me to go home.
I've also been madly trying to organise (from hospital) a new external hard drive with Firewire connection (I have an older Powerbook so the drive can only boot from Firewire). Having found it at one place, it turned out they didn't have it after all?! But I've found another source and my cousin Audrey is going to pick it up for me this afternoon I hope. (Need to reformat the hard drive on the powerbook and previously have just backed it all up at work and done it there!!)
Finally, the 12th Man. If you're a cricket person, and possibly Australian but I think the 12th Man CDs are known in the UK too - well then you may understand ... Otherwise, you've got no hope! Someone at work lent me the full collection of 12th Man CDs which I put onto the iPod. Basically what they are is a takeoff of the Australian Channel 9 Cricket commentary team. Plenty of material there. So there's all this utterly hilarious commentary from the 'voices' of Richie Benaud, Bill Lawrie, Tony Greig etc. with others such as Geoff Boycott making an appearance too.
A lot of it is incredibly politically incorrect - they make up all these outrageous names for cricketers from the sub-continent - eg DoubelDekka Baas, AhbrakemeAndad, Hesa Hasbeen, etc etc etc. I don't know if this just sounds stupid if you haven't grown up where cricket is played, but really with those stupid commentaries and ridiculous names and outrageous situations all coming through my iPod, I just sit here pissing myself laughing (a nice Aussie expression!) Probably people in the corridor, next room, think I'm mad coz they can't hear anything. And I'm weeping with laughter!!!
bye for now ... :)
Posted by
susiegb
at
12:36 PM
3
comments
Sunday, July 15, 2007
white clouds in the sky
That's what I can see out of the window - white clouds moving across a blue winter Brisbane sky ... (Well, I needed to find some sort of title and that was what came to mind, OK?!)
I guess it's time for the next update from me in my (very nice) hospital room ... There was huge excitement here yesterday as the previous evening (Friday) a local football hero has his knee quite badly injured in a game up north, and he turned up here (with accompanying TV and media scrum) to see the specialist, and presumably arrange for a(nother?) knee reconstruction later in the week! I'm not a follower of Rugby League - the only football I have even a passing interest in is soccer, and readers of my other blog will know that I do follow the cricket! in the summer. But that's a summer game ... Football just doesn't do it for me!
Of course, in most countries of the world, football == soccer. That's what they mean when they talk about football! But in Australia they developed variations on Rugby (Rugby League) and Irish football (Aussie Rules), so it's called soccer here!!
Why am I talking about football?!!!
Anyway - to my health situation! Turned out I actually finished the first lot of chemo on Friday. Since then I have been off the dreaded steroids - resulting in me sleeping for 9 hours last night, as opposed to 1-2 on the previous ones! But the steroids probably also kept me feeling a bit more 'up' than I was. Since then I have been pretty quiet, happy to sit in my room and play sudoku on the laptop, read emails, books etc. Not going wandering off downstairs or anything. The doctor says that although I won't get back to my regular energy level, it should even out a bit higher soon. I'm also less interested in eating, though maybe it's more the idea of eating, than eating. I look at what I've got and if/when I try then I can usually quite happily eat some of it. All that fluid weight has dropped off thank god!
Friends drop in and visit - luckily no more than 1-2 at a time. I couldn't cope with a roomfull that's for sure! John came round yesterday - he'd gone to my house to collect his wife's car, and supposedly to bring me some things from home but had left the keys in a different car! He told me a case of wine had been delivered which is a pleasant surprise! Someone who's going round today to water my plants will hopefully be able to take that inside ... (Thanks Georgina - I know you're reading this!!) John also brought me the Peace is Possible book to read which was great!
Anyway - that's it for now. more later ... :)
Posted by
susiegb
at
2:15 PM
3
comments
Thursday, July 12, 2007
2nd post from hospital ...
(hooray - finally I can put in a title properly!!)
So, I've been here for 3 days. 3 day of chemo being pumped into my veins (poor veins, but all in a good cause!) I'm actually attached to 2 drips 24 hours a day. One is continual - something called Mesna which is to protect my kidneys from the ravages of the chemo. And the other is the chemo for 2 lots of 3 hours in every 12 hours, and otherwise saline. The treatment lasts till Saturday - 5 days (the actual chemo didn't start till Tuesday). Then I have to hang around in hospital for another week or so till my white blood cell count comes up enough for my specialist to let me escape for a week!
I have 2 sisters living in London and Dublin. One is a nurse (London) and the other a medical research doctor (Dublin). Both are demanding lots of medical details so I will try and satisfy you! But not having a medical background myself I don't keep many of the details in my head. Although I already know a lot more about cancer and lymphoma and non-Hodgkins lymphoma than I ever did (or wanted to!)
And for yoga people - I'm busily eyeing up the room working out where I can put my mat down when I come back for the 2nd cycle. I won't be able to do much in the first week when I'm hooked up, but hopefully in the 2nd week I should be able to - depending on how I feel I guess. The doctor told me that the 2nd (and 4th and 6th) cycles are more intense in that they target the bone marrow, and so I am reasonably likely to get a fever some time in the 2nd week of those cycles.
Right now I'm still feeling fine overall. I'm having trouble sleeping - that's because of the steroids I have to take every day while the chemo happens (10 tablets)! As I lay awake at 3am this morning I had the happy thought that perhaps as well as keeping me awake, maybe they'd be building up my muscle mass as well! But alas, not!! No good side-effects that I can see!! I can't imagine how anyone could want to take them!! Apparently my iron levels are down too, but not enough to have to get a haemaglobin transfusion.
And putting on weight - when I read that YC put on 10 pounds when she had her chemo I was horrified - after all the effort I put in at WeightWatchers a couple of years ago to lose 30 kilos. Well, they weight me every morning and I've put on a kilo each time!! Today I came down a bit but ... I am promised it's all the fluid dripping into me. Did you know that a litre equals a kilo in body weight?!! And they will make sure I lose it all again!!
And I promised Roy (in response to his comment) that I'd tell you about the presents (see 1st post), or lack of them!! I thought I was so together last week writing lists and putting things to bring with me in piles on the bedroom floor. Then on Sunday when I packed my bag I put it and my clothes on the bed, packed them all, looked at the list I had written (at the beginning of the week - things like phone charger, ipod charger, internet connection) and packed them. And totally ignored the bag of carefully chosen presents, the Pride & Prejudice DVD, Evening Primrose Oil capsules, radio alarm clock, etc etc - which had been in full view, and which I had stepped over to get my clothes!! Anyway, my cousin is going out to my place (45 minutes drive) to pick them up for me today - thanks Audrey!!
This is getting long - I'm gonna stop now ... I'm so glad Julie has put this onto the Ashtangi.NET blog list - I'll try to post about yoga too, and not let the medical stuff take over completely! Because I really don't want it to take over my life!! And like I said on the ashtanga board, I want to go back to my other blog and leave this one when the NHL has left me!!
:)
Tuesday, July 10, 2007
I survived my first night in hospital!
OK, here I am in hospital sitting in a chair next to a sunny window with views over inner city rooftops! And the chemo is being dripped/pumped/whatever into me. Crossed fingers - no ill effects yet! I've been given anti-nausea drugs too so hopefully that will take care of any sickness ...
Yesterday I went to have the porta-cath put in. Although I was nervous about that, it was fine! In fact I spent a lot of time in the X-ray room (where it was done) laughing and joking with the nurses! And this was before they gave me the 'happy drug'!)After that my aunt and cousin picked me up and drove me, plus all my 'luggage', to the hospital where I am now for the next few days. I had the mabthera (monoclonal antibody therapy) dripped into me yesterday afternoon and evening. They up the rate every few minutes, and when they got to 140 (140 what I don't know!) I suddenly got really cold and shivery - my teeth were chattering uncontrollably! So they slowed it back down to 100 and that was fine. And that is the only 'untoward' effect I've experienced so far! Long may that last!!! (But I don't really have the illusion that the whole treatment will be a dream ... far from it! just enjoying it while I can!)
As you can tell I am able to connect to the internet - although it is only dial-up. But that's better than no connection, for sure! And having spoken to the doctor who put the porta-cath in, I believe I will be able to do yoga! I asked him if I could do inverted poses and he said I could do anything! It's actually sealed under my skin (when the cut heals). He said I could swim and everything. So I'm expecting to be able to bring my mat in next time!
Someone said in a comment on my other blog that I was/am an inspiration! Have to say I don't see it like that! Probably everyone who goes through something like this gets an inner strength they didn't know they had. Coz I don't feel like I'm being brave, or strong or anything special! It's just - this is what's happening in my life now and I'm just dealing with it as best I can ... :)
Anyway - that's enough for now ... as I'm stuck in hospital for 10-14 days I'm sure I'm going to be blogging a lot, to relieve the boredom!
Posted by
susiegb
at
12:23 PM
6
comments