My journey back to health

Stem Cell collection update ... and blog hiatus

2010-09-13T10:20:00.003+10:00

I have pretty much put this blog to sleep as far as posting goes. I may resurrect it in the future if necessary (though of course I hope never to have to!) But I'm hopeful that it will remain a useful resource for people recently diagnosed with Mantle Cell Lymphoma - just to show that it can be dealt with; you can get through treatment, often without too many side effects; and that life does indeed go on and almost go back to normal once in remission! That's how it's been for me. Yes there are the odd health issues/things I have to deal with, but I love my life and feel very positive about it continuing a long and good time!

I'll mostly be posting little health updates into my journeys blog as part of everyday life. But I did just realise/remember that I had a Stem Cell collection back in May 2010 which I posted about there, and I don't think that can really be counted as a 'little health update'! It was quite an ordeal (in a minor kind of way!) ... I'm not going to re-post all of that here, but instead link to the post so that people can read about it. So, here's the link: http://susiegb.blogspot.com/2010/05/health-not-yoga.html. (The 'ordeal' bit was more of a mis-management/understanding issue I hasten to add!)

Good blood test results, but no sleep!

2009-11-05T04:12:00.001+10:00

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!!

Great news!

2009-07-08T17:26:00.005+10:00

I'm so happy - today I had my annual CT scans and they came back clear! I don't have to have another one for 12 months - unless of course something else shows up. I was reasonably confident that nothing would show up, but of course I was feeling fine when I was first diagnosed so that isn't really an accurate measure!!

My haematologist is still talking about trying for a stem cell collection. But remembering that we were never able to collect stem cells when I was in hospital, he wants to wait for some new drug(s) that assist in the production of stem cells for harvesting to be available on a trial here in Australia that I should be able to access. I don't know if/when we'd go for an autologous stemcell transplant - he told me that he has some MCL patients that had chemo followed by an auto SCT, and others that didn't have the transplant, and both groups are doing equally as well. But he agreed it would be a good thing to have 'in our back pockets' if it was possible.

The other good news is that he'd ordered a fairly full blood test, partly to test my immunoglobulin levels. I've been on monthly IV-IG infusions for about 7 months now, and they are definitely showing an improvement. As I said to him - I was pretty convinced they were improving because it is now over 6 weeks since I've had a chest infection needing me to go onto antibiotics. All this year, the previous gap between antibiotics has been around 10-12 days at most! He repeated that with IV-IG infusions, they start to kick in around the 6 months mark, and it isn't till around the 12 months mark that the full effect is felt.

This is some of the results:

igG - 5.7 (g/L) (normal range = 6.6 - 14.9)
igA - 0.8 (g/L) (normal 0.7 - 3.6)
igM - 0.3 (g/L) (normal 0.4 - 1.6)

Haemoglobin - 120 g/L
Platelets - 123
WCC - 5.4
Neutrophils 3.3

All good! Well, Platelets are slightly reduced but nothing to worry about. And they did some 'cell surface marker analysis' and he said very few B cells showed up, and NO mantle cells. Which is a very good thing!!!

Drinking wine is good for NHL!!

2009-04-22T15:52:00.002+10:00

http://www.genengnews.com/news/bnitem_print.aspx?name=53145815

".. This study was the first to examine the link among patients with non-Hodgkin's lymphoma. Han and her colleagues analyzed data about 546 women with non-Hodgkin's lymphoma.

They found that those who drank wine had a 76 percent five-year survival compared with 68 percent for non-wine drinkers. Further research found five-year, disease-free survival was 70 percent among those who drank wine compared with 65 percent among non-wine drinkers ..."

Couldn't resist posting this when I read about it on one of the NHL boards! I've drunk wine for more years than I care to remember, so it's all good news!! I did stop when I was going through chemo, but started drinking wine again a few months later ... in moderation of course!

Everything seems to be going well health-wise. I've been on antibiotics for 3 weeks now - am trying to get rid of the cough which comes back everytime I stop a course. So I'm taking 3 lots - 30 days worth in all, and then we shall see. If it comes back again I think I'll have to go back to the chest physician again.

Lately I've been going to have my monthly IV-IG infusions without seeing Dr Bentley. He said just to come and see him if I had a problem. I'll be having a CT scan in the next couple of months so will be seeing him about that, but otherwise life is just flowing on happily normally!

New month new problem! (But I am smiling!)

2009-02-09T19:42:00.005+10:00

Well, that's not quite true - I think I caught this cold at the end of last month, not February! But whatever - I caught a cold from someone (and don't think I don't know who you are!), and apart from the general 'wrongness' of geting a cold in the middle of summer!, it gradually went to my chest (of course!) and I started to feel worse and worse. By last Thursday I had to take the day off work and went to see my local GP. I did try to ring both my specialist and the respiratory physician but one was on holiday and the other had gone overseas!!

Anyway, turned out I had a temp of 38.4degC so the GP was more than happy to give me some antibiotics. They started to take the edge off by the weekend (which was an unavoidably busy weekend working on a website - someone had already come down from Rockhampton - 1000ks away to work on it with me!) So it was really lucky I started to pick up then! I've still got all the trappings of a cold - blowing my nose constantly, coughing, coughing, coughing ... But I've got my normal levels of energy back and feel fine.

Today was the next immunoglobulin infusion, plus another doctor's appointment. Dr Bentley told me I'd have to expect to catch things like colds easier, and for them to take longer to be got rid of - great! He changed the antibiotics I'm on, and also I'd had another blood test last week and he gave me the results.

Haemaglobin - 113
WCC - 8.4 (!!!)
Neutrophils - 6.2

They are certainly something to be excited about - especially the WCC. Normal range is 4.0 - 11.0!!

My immunoglobulin levels were also tested - I know nothing about these, although apparently when I started having the IV-IG, it was 2 which is apparently extremely low! It has gone up to 5 - he said he would have been happier with 6! But at least it's on the way up.

So - that's the latest issue of my health news! Stay posted for next month's issue ...

Report from doctor's visits (plural!)

2009-01-14T18:03:00.007+10:00

Well, this week I somehow had 2 doctor's appointments plus the 2nd IV-IG (immunoglobulin infusion - see, I'm getting to know all the shortcuts!)

On Monday I saw Dr Bentley, followed by the IV-IG. Meeting with him was good - he even gave me a hug, and said I was looking well! He gave me the results from the bloodtest I'd had before my previous visit last December:

Haemoglobin: 111
Platelets: 131
WCC: 3.7
Neutrophils: 1.9

Not too bad. They were a bit down from October, but probably because of all the antibiotics etc. I'd been taking. I'll have another bloodtest before I see him again in a month's time, and hopefully they'll be further up then.

The IV-IG went much quicker than last time. I had all the drugs before starting, to stop me having a reaction to it, and I think it took about 3.5 hours this time. I'll time it properly next time so I know!

Then today (Wednesday) I had an appointment with a respiratory physician. Because of the recently-discovered bronchiectasis that I have. I had to do this 'lung function' test, and all that blowing out hard etc. and re-doing and re-doing - it made me feel that I didn't have that much 'lung capacity' after all! But then when I went it to see the doctor, he ended up telling me that I had above-average lung capacity (for my age!!) So I was pretty pleased about that! I'm sure it's from the ashtanga yoga breathing (ujjayi breath) I've been doing for the past 7 or so years of yoga!

Apart from that, he did various pokings and proddings and asked heaps of questions (as well as reviewing the CT scans). And ended up saying that it was very mild, and as long as I kept up the yoga and other exercise I wouldn't need to do any of the other exercises the physios had given me. And just reiterated what both Dr Bentley and my GP said, that if I get a bronchial infection I'd need to go onto antibiotics quickly, etc etc. And no need to come back to see him at the moment ...

So all in all, pretty good news. I'm feeling pretty happy about things!

It wasn't so bad!

2008-12-19T19:45:00.003+10:00

So, I had the first gammaglubulin infusion (IVIG) today, and apart from the fact that I had to get up at 5.15am to get to the hospital for 7am, it wasn't that bad really!

Of course I did have a few reactions which slowed things down. They up the flow-rate gradually and once they started doing this I started to have a bit of difficulty breathing. (Nothing dramatic - just couldn't breathe in as much as normal.) So, the dose went down again for a while. Then the nurse upped it again a couple of times, and I suddenly started shivering, and feeling really cold. So the nurse rang my doctor, and I got given an antihistamine and some cortizoid steroid or other. They had to wait for half an hour for them to kick in, and then my infusions were re-started, this time successfully! The flow rate get getting raised with no problems!

It was nice to see all the old familiar faces, and they were all pleased to see me too (even the cleaners and people who bring meals round remembered me!) And sitting in the day chemo room is a really interesting experience! People who haven't had cancer, or a close friend/relative with it would never imagine it like this. Everyone is really cheerful and happy, reading their books/newspapers/magazines, listening to their iPods, chatting with their friends who've come in with them. Not the sort of picture that would come to mind about having to have chemo! Because the type of chemo I had (HyperCVAD) was very intense, I actually had my treatment as an in-patient in the hospital - stayed in for around 14 days each time. So this is a new experience for me!

Anyway, I guess it won't be that bad, especially if I either don't have those reactions again, or else I'm given the drugs at the beginning. It took about 5 hours this time but without all the stops and starts it should get back down to no more than 4 hours I think. Apparently the effect is cumulative - it won't make that much difference after just one treatment, but will build up over the next few months. We shall see ... :)

Sigh! and a bit of a hissy fit!

2008-12-17T19:56:00.006+10:00

Well, I saw my specialist today. And as suspected (see this post on my other blog!), because my immunoglobulin levels are so low I do have to have the monthly infusions ... in fact I'm having the first one on Friday!

I'm just going to have a bit of a hissy fit, OK, and then I'll calm down and it'll end up being a part of my 'normal' (!) life ... :)

But right now, this second - I so did not want this to be happening to me! I know it's not a huge thing in the whole scheme of things, specially after what's happened to me in the last year or so! But somehow it really got to me. Almost more than when I was first diagnosed, oddly enough!

Actually, just re-reading that makes me smile and feel somewhat better! I really do need to get a grip on reality!

The waiting room was heaving with people and Dr B was a little harassed! I think there had been some double-bookings or something. And there was me trying to weazel out of having to go through this whole regime (which I might add, is open-ended - ie. every month indefinitely!!). I kept bringing up this and that that I'd heard about on forums, or read on blogs, and he basically kept coming back to the fact that he was the lymphoma specialist and he sees/treats first-hand many many lymphoma patients. Really, (and this is me speaking now) - who is the lymphoma expert? Me because I've read a lot about other people's experiences with it, or him who is dealing with patients and treating their problems every day ... ?!

I think it's the bronchiectasis that I've developed that is the main culprit. If I hadn't come down with that, then even though my immunoglobulin levels are low, I might well have been able to avoid the infusions. But apparently once you have that, it's a prime source of infection in your lungs and because I have a damaged immune system I'd be likely to end up in hospital for a week each time!

So - there's no avoiding it! As I knew all the time. My feeble attempts at knowing what was the best treatment for me better than him were always bound to fail. And I really do know that in a month or two, this will turn into 'no big deal' - as my friend kept telling me at lunch! I was in such a state through the appointment that I never asked about my blood counts or asked a lot of the other questions I had ... I'll be seeing him again in a month and hopefully I'll do all that then!

I did go up and see the nurses after my appointment (Dr B's rooms are on the ground floor of the hospital I was in) and they were very pleased to see me (and the home-made fudge I'd brought them as a Christmas present!) Big hugs all round - and they said they'd make sure I got through the infusions quickly!!

I do feel better after all that whinging (Aussie term meaning complaining!) and stuff! Hopefully I've now got it off my chest and I shall just go back to enjoying life! Which is good, let me not forget that! :)

It's true - I'm really feeling a lot better!

2008-11-03T14:29:00.005+10:00

Just a short note to say that the CT scan of my chest showed signs of a chest infection - nothing else! So I was prescribed some antibiotics for the infection which I started taking at the beginning of last week. Also last week I went back to the acupuncturist I had been seeing in the intervals between chemo treatments last year. I'd suddenly remembered him and wondered if acupuncture could help get rid of this infection/virus/whatever.

And - one or both of them have had a significant effect! I didn't say anything for a few days, because in the course of this illness I have thought I was getting better a few times, only for it to come back with a vegeance a day or two later. But I really am feeling so much better - yippee!!

I am looking forward to teasing my doctor when I see him again just before Christmas, by telling him that I don't know if it was his antibiotics, or the acupuncture treatment that fixed me up!!

October visit to my specialist

2008-10-18T14:19:00.010+10:00

Saw my haematologist on Wednesday for my 3-monthly check-up. It seemed like I/we spent most of the visit talking about my current (not-related) health issues with sinusitis + a "post-viral cough". Which I have posted about interminably on my other blog! I said to him - I'm treating you like my GP! But he didn't mind - I think he likes to know pretty much everything that's going on with me health-wise ...

He had the results of the bloodtest I'd had the previous week (more about that later) and, having done a quick check of me told me that there were no signs of the lymphoma coming back. Well, I hadn't thought there were, but it was still very nice to have this emphasised to me.

He did say that, because my immunity had been pretty much wiped out last year when I was having chemo, there was a faint possibility I had some obscure infection in my lungs that hadn't shown up on the chest XRay my GP had got me to have, and so I'm having a CT scan of my chest next week. I didn't know CT scans would show this sort of thing. Anyway, it'll be good to - either knock out that possibility, or else find out and get it fixed. It's been over 6 weeks of interminable coughing and I just want it to end!!

Anyway - to my blood test results. Great news!! They've gone up again - and I would have thought that all the effort my immune system must be making fighting this 'whatever', would have brought it down!

WBC: 4.5
Neuts: 2.6
Platelets: 152

All now within 'normal' range! Yeayy!! It's taken a year, since my last chemo. And the WBC and Neutrophils have pretty much doubled in the last 3 months. All in all, I'm extremely pleased!!

I'll hear from him later this week about the results from the CT scan. Apart from that I'm going back to see him just before Christmas ...

Portacath came out

2008-08-21T13:38:00.005+10:00

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 ... :)

Great scan results, Good report from doctor

2008-07-15T18:34:00.007+10:00

Well, readers of my other blog will know that I had PET and CT scans a couple of weeks ago at the end of June, and the results were a big Negative, which is an even bigger POSITIVE in terms of my health ... In other words, no evidence of disease! So that was great news. Today I saw my doctor for my 3-monthly appointment, and we went through my big list of questions (which I always seem to accumulate to take to him!) Of course there were a few that I somehow didn't get to, but most of them got answered.

I asked him about Stem Cell collections (actually I meant to ask him about potential Stem Cell Transplants, particularly a mini Allo, but somehow we didn't get to that!) Anyway, after my last chemo we were trying for a stem cell collection, but the required stem cells just weren't materialising, so it never happened. I'd heard about a new drug called AMD3100 that supposedly mobilises 5-8 times more stem cells than Neupogen alone, so I asked him about this. He said that it's still in trials, and isn't available for use in Australia. But he said that as my blood counts were improving (more about that later) he thought that maybe at the beginning of 2009 we might be able to try again for a stem cell collection, using some other drug that I hadn't heard of and can't remember (!) He said that if we tried now it would most likely not succeed as my blood counts weren't high enough, but hopefully in a few months' time it would. He also said that he wouldn't be planning on giving me chemo as part of that procedure.

On the blood test results, my levels are slowly (slowly!) getting better:

Haemoglobin - 111
Platelets - 106 (first time they've been in 3 figures for a year!)
White Cell Count - 2.8
Neutrophils - 1.2

Still low compared to when I started on this 'interesting' journey, but creeping up all the time. I read somewhere about someone whose blood levels took over 2 years to recover. Doctor B said that mine may never recover to what they were but they would be 'acceptable' and enough to keep me from getting infections etc - in other words, to do the job my white blood cells are meant to do.

What else - oh yes, my portacath can come out! I've got an appointment for that to happen in about 3 weeks' time - yeay! As he said, if I need it again it isn't any big drama to put one back in.

We discussed future scans. He said it was up to me whether I had them regularly. He feels he can tell what's happening with me without them, so it depended on whether I needed that extra check. He said he probably wouldn't recommend PET scans anyway as they often give false positives. In the end we agreed on yearly CT scans, which I'm happy about. Interestingly, he said something to the effect that early detection of a recurrence wouldn't affect treatment. In other words, it didn't matter if it wasn't found for a while ...

I also told him about a NY Times article I'd read recently stating that cancer was becoming more of a chronic illness than a 'death sentence' (which I'd never taken it as anyway!) He said that was exactly what he'd been telling students recently!

So anyway, I'm very happy about things! I see him again in 3 months time - no doubt with a new list of questions! But right now I'm happy to let my remission from NHL take a back seat in my life.

I'll be back posting here in October after my next appointment - in the meantime those who are interested in following my 'normal life' can do so here!

:)

New template - I did it!

2008-04-29T16:06:00.004+10:00

Well, I just couldn't leave this blog with that other boring, boring template! So I've found another one. It came from the same place as my other new one (see the link at the bottom if you're interested).

And now to my final health report for now! I had another blood test last Monday and saw my doctor the following day. (my birthday!!) The blood test results were - well, I was going to list them all out but now I can't find them!! If I find them later I'll come back and change this post, but in the meantime ... Basically my WBC levels had come down from the last test (done about 6 weeks ago). But the doctor reckons that these previous test results were probably reflecting the booster neupogen injection I'd had a few weeks earlier. If we take those results out of the equation, then my WBC levels are coming up. So he was pleased, and so was I (once I'd had that explained to me!)

I'll be having scans (PET and CT) at the end of June, and will see my doctor a couple of weeks after that (though he did say he'd ring the results through to me). Assuming all is well with them (which we both are!) he said he's not going to get more scans (or BMBs) done unless there's some other indication of problems down the line in the future. I guess I'll be seeing him every 3 months or so for a while. But I am clear to have a flu injection (which I wasn't last time I saw him), and I can do anything I want! Like go to India, Morocco (that's next year!) etc etc! Yippeee!!!

So, I'll post updates on my health here when there's news. Let's hope there's none, or very little!! No - I'll report here whenever I see the doctor / have tests, etc. But otherwise, for my normal, (happily boring!) life, you'll have to go to my other blog! And, see you here again in July ... :)

Gone back to my other blog

2008-04-17T12:26:00.002+10:00

Had to happen - I'm going back to my original blog - http://susiegb.blogspot.com, and will just post health updates here on this one. Hopefully that won't be happening too often - in that hopefully there won't be much to report on health-wise!! I will post after my meeting with my haematologist next Tuesday. But apart from that, anyone who wants to know what I'm up to will have to go to my other blog!

It's been great doing this - I definitely recommend blogging to anyone who goes through anything like this. Because it's very easy to forget about how it all was, and it's so good to be able to re-visit it from a distance and see how it was, and how far you've come ... :)

And I will definitely update this template sometime!

rope-able!

2008-04-15T14:23:00.004+10:00

I cannot believe I was so stupid! I had decided I'd go back to my old 'journeys' blog soon, and leave this one, now that I'm in remission(!) I still intend to update it with health-news, but I'm moving away from my health being the dominant issue in my life (wonderful to be able to say that!) and so wanted to go back to the other one.

So I had been been looking around the web for nice new Blogger templates ... I found a very nice one, but at one point I'd come back to look at the code for this blog's template to see where it had come from. And I forgot. So I uploaded the new template here, and because I hadn't saved the old (lovely!) template, that one is gone!!

grrr.... #@!!@#@!

Anyway, I've found another simple template for here as a stop-gap, and will keep my eyes open for (yet) another template for this site. I'm keeping the other one (a goldfish theme!) for my 'journeys' blog, which I'll probably go back to in a week or so. Just kind of waiting till I've seen the doctor again next week ... :)

busy busy busy ... :)

2008-04-07T13:50:00.007+10:00

Had a great, if very busy, weekend. But - come to think of it, it's Monday after a busy busy weekend and I'm not tired. So that's really good - my energy levels must still be on the rise!

So, on Saturday I rushed around on the weekend, organising things for the big party, then on Sunday went to a choir alto rehearsal, out to lunch with relatives and got back in time (well a bit late, but still!) for a friend who'd come over for me to give her a lesson on her new, cute-as-anything iPod nano! She's off on a big overseas trip on Wednesday, to the US and then the UK for a couple of months. She won a Churchill Fellowship to investigate the establishment of a collaborative print/poetry small press! (I copied that blurb from the website!) I'm also looking after her chooks while she's away!

And I did manage to get to yoga class too, which was good. It's interesting, my flexibility and strength are still not back as they were, so I'm using the opportunity to approach most poses as being new to me, and sort of seeing them through new eyes, seeing new aspects to them.

Practising with someone different

2008-03-31T09:49:00.007+10:00

Well, when it came time to go into Brisbane to my yoga class on the weekend I didn't feel up to the 40 minute drive, so instead I practiced at home with Mr Swenson! It's the first time I've done that and it was good. Though I only got as far as the marichyasanas, and wasn't doing full vinyasa or anything. But it felt really positive. I've had a real block about practising at home for ages - best I was able to do was practice at work at lunch-time (don't ask me what the difference is - I don't know!) Maybe now I'll find it easier ... !

I actually got the David Swenson DVD last year in the hope I could use it when I was in hospital or something - but that idea didn't go anywhere as I ended up not being able (strong enough) to practice then. Now I think I'll get the John Scott DVD too.

Last week I ended up going to the university health clinic and seeing the doctor. Hadn't seen her since I started my treatment last year so she was pleased to see me and catch up on how it'd all been. But - because my cough had been hanging around and getting worse, I felt I needed to get it checked out. Had a chest x-ray and turns out I've got (or had) bronchitis! Great!! Onto the antibiotics again and now (4 days later) am feeling much better. Not coughing myself sick at night etc anymore !!!

And ... life is good :)

For Dog and (particularly) Cat lovers - very funny!

2008-03-27T09:44:00.003+10:00

Someone at work sent me this, knowing I was a cat person. I loved it!

Excerpts from a Dog's Diary......
8:00 am - Dog food! My favourite thing!
9:30 am - A car ride! My favourite thing!
9:40 am - A walk in the park! My favourite thing!
10:30 am - Got rubbed and petted! My favourite thing!
12:00 pm - Lunch! My favourite thing!
1:00 pm - Played in the yard! My favourite thing!
3:00 pm - Wagged my tail! My favourite thing!
5:00 pm - Milk bones! My favourite thing!
7:00 pm - Got to play ball! My favourite thing!
8:00 pm - Wow! Watched TV with the people! My favourite thing!
11:00 pm - Sleeping on the bed! My favourite thing!

Excerpts from a Cat's Daily Diary. ..

Day 983 of my captivity. My captors continue to taunt me with bizarre little dangling objects.

They dine lavishly on fresh meat, while the other inmates and I are fed hash or some sort of dry nuggets. Although I make my contempt for the rations perfectly clear, I nevertheless must eat something in order to keep up my strength.

The only thing that keeps me going is my dream of escape. In an attempt to disgust them, I once again vomit on the carpet.

Today I decapitated a mouse and dropped its headless body at their feet. I had hoped this would strike fear into their hearts, since it clearly demonstrates what I am capable of. However, they merely made condescending comments about what a "good little hunter" I am. Bastards.

There was some sort of assembly of their accomplices tonight. I was placed in solitary confinement for the duration of the event. However, I could hear the noises and smell the food. I overheard that my confinement was due to the power of "allergies." I must learn what this means and how to use it to my advantage.

Today I was almost successful in an attempt to assassinate one of my tormentors by weaving around his feet as he was walking. I must try this again tomorrow -- but at the top of the stairs.

I am convinced that the other prisoners here are flunkies and snitches. The dog receives special privileges. He is regularly released - and seems to be more than willing to return. He is obviously retarded.

The bird has got to be an informant. I observe him communicating with the guards regularly. I am certain that he reports my every move. My captors have arranged protective custody for him in an elevated cell, so he is safe. For now................

party, and blood levels, and easter

2008-03-26T15:07:00.009+10:00

In the order of the blog title ...

1. I'm having a party! Yes, shy, retiring me is getting out there and having a party! I figured I've got so much to celebrate after the past few months, and decided to combine it with my birthday next month. And for the invitation, I found this photo of me taken more years ago than I like to remember! It was in India in the 70s ... :) Just a few birthdays ago, as it says!!

So the party is going to be held in the back yard of this lovely cafe in Brisbane - they are doing the catering and all. I just have to invite the people, extract a contribution from them (!) and do the music!! No doubt pictures from it will appear here afterwards! It's pretty exciting! All part of my new year's resolution to be open to new opportunities!

2. And next: I had a blood test yesterday and when I rang my doctor for the results I was fully expecting to be told they'd fallen and I needed to have another injection to stimulate the white blood cell production. But the injection I had last month seems to have jump-started my bone marrow! My haemaglobin had gone up to 82 (from 50) and my neutrophils are now 3.1 (up from 1.something)!! I was thrilled and my doctor is really pleased too!

3. And I had such a lovely time in NSW (new south wales) at Easter! My brother-in-law and nephews came to my Mum's on Good Friday and took us out to lunch. That evening she had arranged for some people to come round for drinks (my mother being an indefatigable entertainer!). Then on Saturday we went to Sydney, had yum cha in Chinatown (with Jo and Emma), and then saw the Elton John musical - Billy Elliott. Based on the film ... Just fantastic! Apparently it's going from Sydney to New York - so all you NY-ers who are into muscials - go and see it! It's still on in London apparently, too. And finally on Sunday we had a quieter day - phew!

Got home on Monday afternoon, just in time to receive 5 chooks coming to stay for a few months while their owners go overseas! Fresh eggs again - yum!

rushing ...

2008-03-19T09:23:00.004+10:00

I smiled when I read yoga gumbo's blog this morning - why am I online! Well, I'm online coz I'm at work and since I've achieved something I have been struggling with for ages (a 3-level CSS navigation menu) I've got a bit of space to hang out! But I'm flying to Sydney tomorrow. Haven't done any packing yet, and I'm still intending to go to choir practice tonight. So before I go out tonight I've got to somehow pack without my cat seeing me doing this! Not easy - specially when I have no idea what I'm going to take! Then go off to choir practice 45 minutes drive away. Then tomorrow morning I've got to get Miss Mieke Pussycat into her carry-box, leave the house by 7am, drop said pussycat off at the pet motel, and then get to the airport parking place by 8.30am. A big ask ... So I really better not imagine I can get my laptop out at home tonight!

Despite all my whinging about colds (which I've still got!) I managed to get to yoga on the weekend. So glad I did - it was wonderful. Haven't managed to do any more since then because I'm still not feeling 100% and am doing my best to 'be sensible' and look after myself. But I'm taking my mat with me to Sydney (well, country NSW) and hope to be able to give it a go down there.

I'm also feeling a bit ashamed of myself, making such a big deal about what is really, just a cold, albeit a nasty one. I think I need to try and ease myself back from this health obsession! I know it's all understandable and everything, but still - I need to get a reality check about what I'm getting upset about! Save it up for something that deserves being upset about!

2 steps forward 1 step back - sound familiar?!

2008-03-13T17:08:00.003+10:00

I guess that's my life story at the moment. But hey - I should be grateful it's not 1 step forward 2 steps back!!

So, on Monday evening I got that 'scratchy sore throat' feeling and thought - uh oh! One of the guys I work with had been off for a week with a really nasty cold and it looked like it was coming my way! Which it was/did! I've been off work the last couple of days, which means eating into my holiday days, as I've got no sick days left at the moment! No yoga, no 'curves' ... hopefully I can make it to yoga on Saturday. We shall see.

I started with the 1 step back bit. But on Tuesday I went to see my doctor, and the results from my blood test the previous week were pretty good! My neutrophils are up to 1.1. Can't remember when they were that high before! Just so you know, 'normal' is 2.0 to 7.5. But mine have been hovering around the 0.4 - 0.6 range for months! And my platelet count was up too, to 57. (Normal count = 150-450 so a ways to go there!)

However, before anyone gets too excited, he said it was probably largely because of an injection I was given just before I left hospital last month to stimulate the production of white blood cells. The effects of this last for about a month. However, I'm going to have another blood test in a couple of weeks, and if it's gone right down again, have another of those injections. He thinks it 'may' help my bone marrow recovery. At the least it should help me avoid getting staph infections!

Anyway, though I've been fed up having to be off sick yet again, and feeling like death warmed up(!), I'm still pretty pleased about my blood results. And today I've been feeling a bit better so I may go back to work tomorrow. Just the one day and then the weekend.

This post needs a title but I don't know what it is!!

2008-03-06T16:14:00.005+10:00

Finally made it to yoga last Saturday. It was wonderful to be there - once again apologies and explanations to the teachers for this being my 3rd re-start!! I really noticed my lack of strength. By the time I'd done 5 Surya Namaskar As and then 3 Bs, I had to stop (the Surya Namaskars I mean)! My shoulders were really tired from being in downdog. I can't remember that happening since the days when I first started ... ! Anyway, I did all of standing, and then some finishing. Not doing shoulderstand yet but am doing that 'legs up the wall' pose - can't remember what it's called Like a more passive shoulderstand I guess.

And so far this week I've done one practice at work at lunchtime. (Didn't go as far!) Tomorrow I should be able to do another one. So that'll mean I'll have practiced 3 times this week. I guess it's a start !!!

Yesterday after work I went to my (cranial) osteopath. She got really excited because she said my body told her what treatment she should give me!! Whatever that means, it feels good now. And then on to choir practice. I'm only staying for about half of that at the moment, leaving at 8.30pm. If I stayed till it finishes normally, 9.30pm, I wouldn't get home till after 10pm and I think that's a bit too late for me at the moment! Oh I'm having to mollycoddle myself so much these days ...

my superhero quizz!

2008-02-22T09:52:00.002+10:00

Who the heck was the Green Lantern?!!!!

Click here to take the Superhero Personality Quiz

another new start!

2008-02-21T13:12:00.004+10:00

Seem to be making a habit of these ... sigh!

So, I'm back at work again, trying to take it easy and not do too much. And trying very hard to be a bit more careful about hygiene etc. Never was a great one for that - always happy to pick food up off (my) floor and eat it! But all this has given me a bit of a fright - on Sunday I cut myself in the kitchen and got in a complete panic that some of the staph bugs that live all over our skins could get into me again via the cut! Rushed around madly looking for disinfectant etc ... Touch wood I seem to be OK (it is Thursday after all now) from that. But it was a bit of a wake-up call to take more care and be more aware for a while, till hopefully my immune system comes back up.

Went to choir practice last night for the first time (since last July). That was lovely ... I was actually a bit tired and could have done with not having to drive into Brisbane. But I really wanted to get the music and just see everyone again. I only stayed till 8.30, and was home and in bed by 9.30 so I guess it wasn't too bad!

And so to yoga ... am going back to class on Saturday again - that's what I mean about another new start! I've been missing for 2 weeks from class so it'll be nice to go back again, and start again from the beginning. Not that I had got past 'the beginning' anyway, so ...

big smiles all round

2008-02-15T17:43:00.002+10:00

Me and the pussycat are home - both of us very happy to be here! Feeling 100%, bone marrow completely clear and everything looking great again!

Tomorrow a big day working on the foame:e poetry zine, the new edition for which goes live on 1st March. The 2 other people involved are coming over here (with lunch!) to spend the day working through what's been done and what still needs to be done.

Then Sunday and Monday I can collapse again, going back to work on Tuesday ... :)

she spoke too soon ...

2008-02-13T14:36:00.004+10:00

Well, funny how things can change! During the week I was feeling more and more tired, and suddenly realised I should be checking my temperature. On Friday evening when I got home from work I did that and discovered I had one! 38.2C! So I rang the hospital, and got a call back a while later telling me to come back in!!

Not what I had been planning to do with my weekend!! Most of my clothes were waiting to be washed over the weekend, I had hardly any library books ... a very different scenario from when I would go into hospital last year! And what to do with my pussycat?! In the end I decided I'd probably only be in a couple of days, so left lots of food down for her, plus her cat-door open so she could get in and out. Took enough clothes for 4 days, a couple of books and my laptop, and drove off. Five days later, and I'm still here, though I'm feeling fine!

Turned out I had a staph infection in my porta-cath (the device they 'implanted' into me to drip intravenous fluids/chemo into me). God knows how it got there, but ... Anyway, they had to resort to pretty heavy duty antibiotics to get rid of it (I've been on 3 different ones of varying strengths!). But by Monday I'd stopped having shivering, teeth-chattering fits and/or heat attacks and my temperature had gone back to normal! And I have been feeling perfectly fine since then! My doctor is keeping me here till the end of the week as he wants to keep the antibiotics up so make sure it doesn't come back. Which seems like a good idea!

Luckily I managed to get someone to go out to my house on Sunday to collect some more clothes, and most importantly, to catch Mieke pussycat and take her to the pet motel! That was such a weight off my mind that she managed to do this! I'd been so worried about her ... she's such a sociable cat, and hates being left for even a couple of days!

Felt really bad to be off work for another week (at least) after I'd only been back for three. I know it's not my fault, but still ... They are, of course, being really supportive and telling me to take whatever time I need.

I certainly do live in interesting times ... :)

I learnt something ...

2008-02-06T13:52:00.001+10:00

from the nurses, not the doctor, yesterday! Apparently it takes 6 to 12 months after you have finished having chemo, for its effects to fully leave the body!! Maybe my doctor or someone told me that before, but if so I'd completely forgotten it! I really need to take that on board and get rid of my unrealistic expectations about what I 'should' be able to do!!

Anyway - my last mabthera treatment yesterday - went fine, like a breeze. Though my blood levels have got lower this time. I'm wondering if the fact that I'd given up on taking the astrogalus (Chinese herb) lately has had an impact on them? I stopped because I thought it wasn't doing anything. My blood levels didn't seem to be improving. But they weren't going backwards either!! Anyway, I'm back on that now! And my doctor said just to watch my temperature (ie. take it if I think it's rising, and let the hospital know immediately if that happens), and not to worry?!?!

Meeting with doctor went fine. He's scheduled a series of 'end of treatment' tests for after Easter - bone marrow biopsy, PET and CT scans. He said he's not expecting to find anything, but just to be sure/have as a reference point. And then (I think) I'll be down to 3-monthly visits to him, to keep an eye on things.

Now I can forget about it all for the next 6 weeks anyway!!! Have to take it a bit easy today - I'm always a bit tired the day after treatment. But things are good, going well ... !

just standing ...

2008-02-04T13:35:00.001+10:00

Well, I went to class on the weekend. I was pretty tired the whole weekend, but decided I would go anyway. I'm glad I did. I told Richard I thought I'd start off (again!) by just doing standing, as he had suggested the previous time I started again! He was pleased - said he always suggests that to people who are starting back after a long illness (or whatever) but very few people would do that! (good mark to me!!)

Anyway, that's what I did, and it was good. I was glad. I'm going to carry on that way for a few weeks and gradually build up again.

Coz actually I was quite tired this weekend ... I'd been tired the previous one, the first one after coming back to work, and felt fine about that. But this time I wasn't expecting it and so was a bit disappointed! However, I expect I'm suffering from a case of unrealistic expectations about my progress! In that I'm thinking I'm already fully recovered! Obviously not the case ... Just have to keep reminding myself to take it one step at a time!

(from a not very patient person!)

new beginnings ...

2008-01-31T15:53:00.001+10:00

Yeay - my back is better! I managed to get a cancellation appt with my osteopath yesterday morning, and she definitely fixed it this time! (fingers still crossed after saying that!) Today I decided to start doing lunch-hour yoga again. I'm going to (probably) keep going to class one day a week and will do whatever of my 1st series practice feels right to do; but the rest of the time I think I'm going to take it incredibly slowly and build it up (from a very slow start!)

Of course I have all these plans and ideas and things will probably change, but that's where I am now!!

And - depending on what the doctor says next week, I may well start to think about putting this blog to sleep (hopefully forever from the point of view of me having to write about my cancer journey!), and going back to my original one. But we shall see ... :)

If it's not one thing it's another ...

2008-01-28T14:04:00.001+10:00

Yeah - I've now got a bad back! Honestly ... I haven't had one of those for years, and I wish I didn't now too! No idea how - my osteopath thought maybe sleeping badly in a wet tent on a wet mattress at Woodford might have something to do with it ... whatever! Unfortunately my osteopath is too popular for her own good - well, for my good anyway! Had to wait till next week (a week from today) before I can see her again. Right now paracetamol is my friend!

Not helping yoga either. Didn't go to class on the weekend - am scared of doing more damage to it. Oh well - must stop whinging about it all. After what's happened to me in the past few months this is nothing!

Anyway - went back to work last week for the first time in 6-7 months! And it was great - I felt good at work, enjoyed it (using my brain and skills!) and wasn't tired. Well, I was exhausted when I got home the first evening, but since then I've been fine. I have been careful and not doing too much ...

Finally a film report! I've been to see 3 films in the last few weeks:

Golden Compass: I loved that. Based on a children's book - sort of fantasy and futuristic, but as though it was imagined by someone from the late 19th/early 20th century. People were travelling in airships, and driving in wonderfully weird machines.

2 Days in Paris: Again, I loved this. Very funny!

I am Legend: Saw this last night - it was far too scarey for me! If I'd known how scarey it was I'd never have gone! Also, there were a few too many inconsistencies. Like, how come his car looked so clean after 5 years?!

That's it!!

Back to class ... at last!

2008-01-11T17:12:00.002+10:00

Well, I went to my first Mysore class in just over 6 months today! And it was ... wonderful, and sort of like I'd never left! Not that my practice was like it had been last July. On my teacher's suggestion I did less sun salutes, left out the parivriti (sp?!) variations and finished standing early. Then just did some sitting - to marichyasana C, and some finishing poses. But it felt great - didn't feel like I was pushing myself too much or anything. And the teacher said some of my practice even looked better than before!! Go figure ... !

Apart from that I have been working my way through a list of things to do before I go back to work - which day is fast approaching - 21st January. I had my 2nd-last hospital treatment (mabthera) last Tuesday. Am going to have a proper discussion with my doctor next time about what happens next, etc!!

And next weekend (well, probably next Friday) I'm going down to stay with a friend in Byron Bay (or nearby) for the weekend. Same place I went to with Wendi for a night a couple of months ago. Hopefully the weather will be nice enough to swim - in fact I think it'll have be pretty bad for me to forego a chance to swim in the ocean!!

new year, new healthy me!

2008-01-02T17:10:00.001+10:00

It's kind of surreal to be here in a new year, looking back at last year, and thinking about aspirations (resolutions?!) for this year. Previously when I've been here it's been kind of prosaic. Stuff like - better job, travel overseas, progress in yoga, and add in good health as an afterthought! This year I'm wishing everyone a happy and extremely healthy new year! And that's definitely what I wish for myself!

When big things happen to you, it makes you realise what is really important in life! I look back at the last 6 months and still kind of roll my eyes and wonder - did that really happen? What was that all about?! Still feel like I've spent the past few months in a kind of bubble, beside but not in 'normal' life. And as I look towards getting back into that (so-called!) 'normal life' later this month, I feel it's important to not just get submerged back into things as though nothing had happened. I'm not really sure what that means - mostly that I want to appreciate and enjoy life, and not just drift through without stopping to experience what's important!!

One of the things I'm looking forward to is starting yoga properly again! Classes start at my shala again next week ... I don't know how far I'll get - certainly no further than navasana! When I was at the Woodford festival this past week I did a couple of 'flow yoga' classes. Showed me where my flexibility is (or isn't!), and ditto strength. I couldn't even hold downdog for long ... ! But in a way it'll be nice to start over again ...

update from downunder

2007-12-12T13:28:00.001+10:00

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!!

2007-11-27T17:58:00.001+10:00

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!

2007-11-03T15:32:00.001+10:00

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 ...

2007-10-11T15:07:00.001+10:00

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 ...

2007-09-30T10:58:00.001+10:00

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 ...

2007-09-23T17:15:00.001+10:00

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

2007-09-16T15:17:00.002+10:00

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!

2007-09-12T07:10:00.001+10:00

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!

2007-09-09T11:24:00.002+10:00

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

2007-09-04T10:12:00.002+10:00

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!!

2007-08-30T10:47:00.000+10:00

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!

2007-08-29T16:47:00.001+10:00

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!

2007-08-26T17:16:00.001+10:00

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!

2007-08-13T11:45:00.001+10:00

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

2007-08-10T16:51:00.001+10:00

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!

2007-08-08T11:23:00.002+10:00

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 ...

2007-08-05T10:54:00.001+10:00

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 ...

2007-08-01T10:36:00.002+10:00

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 ...

2007-07-25T20:56:00.001+10:00

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 ... :(

2007-07-23T10:46:00.001+10:00

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 ...

2007-07-22T11:37:00.001+10:00

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 ... ?!

2007-07-18T12:36:00.001+10:00

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

2007-07-15T14:15:00.002+10:00

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 ...

2007-07-12T10:45:00.001+10:00

(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!

2007-07-10T12:23:00.002+10:00

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

2007-07-06T11:13:00.002+10:00

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.