update from downunder

Well, since I last wrote I've been getting stronger, and getting accustomed to being 'in remission'! So I'm no longer faintly downcast (?!!) and half-wishing I was still going to the hospital! (Did I really feel that? Saying/writing it makes it seem even more ridiculous!!)

It seems this feeling runs in the family! Another of my half-sisters who also had cancer apparently had to stop after the 4th of 6 treatments for the same reason I did (ie. low white blood cell count), and felt like she'd failed the course! Even though she's now well over the 5 years remission ('clean'?!!) mark. And a friend in London sent me an email saying I had to stop being institutionalised!! I laughed, because it struck a chord! She (you!) will be glad to know I'm well on the way to being de-institutionalised!!!

Yesterday I went to the hospital to have another CT scan, and then to have my monthly treatment of mabthera. Had a good chat to the doctor. Apparently my WBC (white blood cells) are improving, but still taking a long time - ie. not there yet!!

I asked him whether he thought I'd be able have the stem cell collection procedure at the end of this treatment (February). He kind of sidestepped that and said he no longer felt it was a useful treatment for my type of lymphoma. He said he used to do it and transplant the stem cells at the end of treatment, but research had shown it didn't make much difference one way or the other.

Anyway, things still looking good, although my haemaglobin is a bit down at the moment. I'm taking folic acid, but I think I'll look out for B12 too - not being a meat-eater means one's options are more limited (broccoli, spinach or supplements as far as I can tell!!)

I've started going back to the gym (Curves) to build up some strength. I still can't stand up from sitting on the floor without using my hands, but my strength (such as it was!) is definitely on the way back.

For whatever reason (I can think of a few but don't know how valid they are!!) I've decided to wait to start back at yoga till after Christmas and Woodford. Too many interruptions as far as I can see between now and January. I will keep doing some sun salutes etc. but a proper practice will have to wait till then.

And I'm going back to work on the 21st January! So I'll have to fit in everything I want to do (mostly getting stronger and better!) before then ... :)

In Remission - no more nasty chemo!!

Yes, it's true! Much to my surprise - in fact I was quite taken aback when my doctor told me that I was in remission and he wasn't going to give me any more chemo! I had seriously been expecting to be told I'd be back in hospital the following Monday! But no, I'm finished with the chemo and am now on the upward slope of getting my strength back and planning to go back to work next January!

I'm still having the monoclonal antibody treatment (called Mabthera here in Oz. Rituxin in the USA) every 4 weeks until February. I have that as a day patient at the hospital - 'administered' the same way as the chemo, ie. through the portacath. But that's all. No more anti-fungal medication (?!), no more spending weeks in hospital ... ! To be honest it still seems really odd! Everyone that I tell is utterly thrilled and excited, and I'm still wondering about it all ...

I guess part of that is because he did say that since my white blood cells had still not recovered sufficiently, he actually couldn't give me any more chemo, even if he'd wanted to! So I guess it's lucky I am in remission!! And to date he/they haven't been able to do the stem cell collection. Don't know if they will in the future, or if it's just something that won't be possible.

I do have heaps of questions now, but at the time I was just so dumbstruck (I'm writing them down to ask the doctor next time I see him)! He kept saying to me: "this is good news Susie!!" Anyway, they'll do a whole heap more tests (bone marrow biopsy, CT and PET scans) in February, and hopefully (as I fully expect!) I'll be clear then too ...

So ... more news later but it was way past time to write here again). (Don't get me started on the computer problems I've been having!!)

:)

Still at home ... it's been a while!

Haven't written for ages so I'm pulling myself together and putting a few things down!

I did get out of hospital that Friday - without having the stem cell collection in the end. My white blood cells and stem cells were not recovering fast enough and it was going to go into the following week ... the head sister on the ward basically told my doctor I'd go mad if I wasn't discharged, so I was!! Good to see the people right on the ground still have that power - or in this case that I have a doctor who is happy to accept their recommendations!!

So anyway, I came home and my friend Wendy was here for 2 weeks with me which was lovely. We had such a lovely time together, as she said, it's all very well to have long distance friendships, but you really need to spend time together sometimes! She's on her way back home now - left on Monday for the UK and back to Portugal in another couple of days.

When I first came home I was really tired and lacking in energy - much more than in previous times. But I have slowly gathered strength again and now - just over 3 weeks after I left hospital, I'm feeling pretty good. I've been having blood tests regularly - so far my wbc are still low but I think recovering now. I've had another bone marrow biopsy to see what was happening, and the good news is that the lymphoma has not returned!

But I'm on a 'wait and see' policy about when I go back to the hospital / resume chemo etc. The doctor said he may end up changing my treatment around a bit ... I really hate this open-ended aspect - I want to see an end date!! But I have to a) know that 'this too will pass' (always easier to quote that to others than to apply it to oneself!!), and b) trust the doctor. Which I do ... I'm seeing him in a few days and we'll be able to talk about all of this, and hopefully get some sort of plan again!!

Next week I'm going down to NSW to stay at my mother's for a few days, which will be nice.

The other thing that is affecting my life at the moment is - car problems! I have spent so much on my car this year - it's had two major things wrong with it and was off the road for over a month. I live 15 minutes drive out of town, so this meant I had to hire a car for all that time ... And now, another similar problem!! It's in the garage now and hopefully they will fix it next week so when I come back from down south I'll be able to pick it up again ... Grrrrrrr!!!!

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 ... :)

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 ...

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 ...

Back to 'school' tomorrow

That's what it's sort of like - having had a few days off at home, but knowing that tomorrow it's back to hospital for a couple of weeks, back to chemo, back to all that stuff!! But hey - I'm on the downward slope now - this will be the 4th of 6 treatment periods so each one brings me closer to THE END! (I hope!!)

This time I'll be having the stem cell collection in the 2nd week, so I guess that'll be something different! And I've got a website to make while I'm in there - people in hospital will probably think I'm mad! But as well as working at a university as a web developer, I have a freelance web development business - Greendoor Websites and currently have a website to make for an astrologer. The design has been done by a graphic designer friend, and I've got the photoshop files from her now, so I can have fun playing with that while the chemo drips into me!!

Have had a lovely few days at home. Mum has been here cooking and stuff. And friends have dropped in for lunch and/or to visit. I've even managed to do some summer clothes shopping!! This was all, of course, towards the end of the few days. The first 2-3 days I'm usually affected by the ghastly steroids - I suppose they take a while to get out of my system. But now I'm feeling pretty fit (well, relatively speaking!) so I suppose my body is ready to go back and be attacked by/work at processing the chemo again.

And ashtangi people - I have come to the realisation that in all probability I will not be doing yoga at all until the treatment ends (mid-end November). I just have to let go of that, and enjoy it vicariously through all the ashtangi.net blogs! So keep posting!!!!

btw - I've put 2-3 'hair' photos up on Flickr. No 'bald eagle' ones (unless pressed!) but one from about 10 months ago (ie. normal-length hair!) plus a beanie and a wig view! Everyone is saying the wig looks great and I should keep my hair that length when it grows back. But my hair isn't curly, so it's not going to look like that ... we shall have to see!!

The Chaser - hope the ABC vodcast servers are up to the traffic!

Note: I wrote this post and uploaded it, and then realised that because of the date some people might find anything that contained laughter and Osama bin Laden in the same paragraph offensive or inappropriate. A lot of Australians tend to laugh at things as a way of bringing them down to size, not being frightened of things we can't control. And these guys (The Chaser) take no prisoners. There's nothing they won't take on ... So, I'm sorry - just don't read this if you think it'll offend.

Don't know how many people overseas knew (or cared!) about the APEC meeting of 'world leaders' from the Asia Pacific region held in Sydney last week. I'm just glad I don't live in Sydney any more - it was locked down like somewhere from North Korea or Beijing!! Concrete barriers everywhere stopping anyone going anywhere near all these so-important people!

And then the outrageously funny guys from the ABC (Australian Broadcasting Corporation)'s 'The Chaser's War on Everything' managed to drive an official 'limousine-style' car (complete with Canadian flags, outrunners etc) right through all the checks up to the hotel where George Bush was supposed to be staying, and one of them got out dressed as Osama bin Laden and they all started walking up to the hotel. That was the first point anyone had a clue that all was not well!! Their official passes all included words like 'and give us lots of ice cream' etc etc!! The police were mortified, the majority of Australians cheering and in hysterical laughter! (Including my conservative-voting mother!) Apparently it was over the news all over the world ... :))

Of course they've all been charged with god knows what and threatened with jail, but I can't believe that anyone would allow that to happen. Anyway, tonight is the night the weekly show goes to air. The ABC podcast and vodcast a lot of their TV and radio shows. I can only imagine the hits their servers are going to take tonight as people (including me!) rush to download the vodcast of this episode onto our iPods!!! They must crash! Here's a link to the Chaser area of the ABC website ... http://abc.net.au/tv/chaser/war/ - enjoy!!

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!!

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 ... !

Another yoga snob!!

Yes, I did the Yoga Journal survey too, and turns out that even someone like me who has never had a 6-day a week practice except in India (right now it's more like once every 3 weeks but that's just for the moment!!) - is a yoga snob!!

And, looking at the picture I must emphasise that although my yoga shala does supply blankets and the odd block, I would never be seen dead in a place with ropes hanging off the wall!!! Plus I have one friend who does Ashtanga, but not at the same shala. Don't really know any of the other people I practice with, though it'd be nice to. That's one of the unsociable things about mysore classes - everyone ends at different times so it's hard to hang out and talk after class!

(Nice to do a post with nothing about my health issues!!!)

:)

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!! :)

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!!

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.

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! :)

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!

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!!! :)

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 ... :)

home sweet home ...

Well dear readers, I did escape from hospital yesterday (Tuesday) - to much rejoicing. Having learnt a good few lessons about how I do not NOT have control here!! I have to take on that old hippy persona, and 'go with the flow'!! (Why is that so hard nowadays ... ?!!)

Example: I do remember being told the cycles would be 3-4 weeks. So then, knowing when my treatment started, I thought I had it all figured out when I saw that the doctor had written on a form for my superannuation (benefit) fund that treatment should finish by early November. That's 6 x 3 week cycles I worked out. Perfect!! So I marked it all up in my diary and told people those dates when I'd be home, people have been booking flights based on all that! But it all came from me, not the people treating me!! And then I get told that the dates may slip - it depends on how I do in the week away from hospital, may even end up being 2 weeks break, we'll just have to wait and see ... !!!

Never realised I was such a control freak!!!!

It is all 'good', as they say!!!

Anyway - enough of that. I'm home, sitting in bed with cat purring beside me. But I'm very very tired! I have looked at my yoga mat, but that's as far as I've got!! Seems to heavy even to pick up and unroll!! Just have to hope that this is all because I've come off the steroids (no complaints about that!) and that that some strength will come back in the next couple of days
... But even if I never touch it while I'm at home, I'll definitely take a mat into hospital next Monday ... :)

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!

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!!))

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 ... :)

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 ... :)

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!!

:)

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!

first post

Well, I haven't set this up completely to my liking yet, but may as well make a start!

I'm off to hospital on Monday to start my chemo treatment for non-Hodgkins lymphoma (mantle cell). I can take my laptop in with me, and hopefully that means I'll be able to get connected somehow. So I'll post some more info etc then, when I can slow down. Right now it all seems such a rush - doing all the last minute things etc. As I've got to stay in hospital for 2 weeks ...

Today's my last day at work for a few months. I may be able to come back part-time in November or December, or maybe not till January - time will tell I guess! Anyway, to my total amazement, they had a morning tea for me at work today, and I got given 60 small presents! I'm to open one every other day or so!! Someone else here who'd been through chemo a couple of years ago suggested this ... I was blown away! In fact, it's probably the first time I've cried in all of this!

This evening I'm off to QPAC (Queensland Performing Arts Centre) where the choir I'm in (QUMS) is singing Carmina Burana as part of a huge youth music festival. Should be great - we're not all that youthful :), but anyway, a great way to start this next 'step' in my life!

And tomorrow I'll be going to my last yoga class for a while. Though I'm hoping I'll be able to get to a class in the one week of the 3-week cycle that I'm at home. We shall see ... I've got my David Swenson dvd so I can practice at home in that week. I just have no idea what I'll be able to do with a porta-cath in. I'm not taking my yoga mat into the hospital for the first time - the doctor was quite surprised when I asked if I'd be able to do yoga during that period! But - I'm taking it all on a 'wait and see' basis. If it seems possible then I'll take the mat in the next time.