home sweet home ...

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

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

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

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

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

Not going home today after all ... :(

Sadly, although my white blood cell count is on the way up, my platelets are still down, and the doctor thinks I might be at risk of infection if he lets me go home today ... So I'm going to have a platelets transfusion today and hopefully tomorrow I can escape (80% chance he says!)

Not that I'd have tried to push it or anything - I'm always going to do whatever I have to do to make sure I get through this in the best health possible. And like I said, I do trust him - not in the older generational way of thinking that doctors are god and their words are gospel, but I'm damn sure he knows an awful lot more about this than I do and has only my best interests at heart!!!

Of course this news wasn't helped by the fact that this morning in the shower I discovered my hair was starting to fall out! I knew (theoretically!) that it would happen, and that I would find it difficult - and now it has started ... sigh!! I've already gotten a wig to wear - length sort of halfway between my current shoulder-length hair and a very short cut. Covers my ears, and it did look really nice when the wig lady tried it on me last week. But ... just another big step on this journey I guess! Need to get hold of some beanies etc. Angela is going to lend me a very nice one that Doris (her mother) knitted for her. When it gets warmer again I'll probably experiment with scarves too ... but absolutely no turbans!!!

Actually, in the paper yesterday there was a photo of the two-woman fashion designers/ owners of Australian fashion label Sass & Bide. They're in their 30s I guess - and one of them is 2 months out of chemo for breast cancer, and had really short hair - probably only 1-2cm (I never know about No. 3s, 2s etc!! What is what!) She looked gorgeous. She is about 20 years younger than me, but still. It reminded me when I was a hippy in India in the 70s I met this amazing French hippy girl called Gypsy (!) who had shaved her head and also had a nose ring! I got a nose-ring just like hers, and was tempted by her shaved head, but probably more theoretically than actually!

Lazy Sunday ...

Still sitting in the armchair in the window (should escape home tomorrow). Been reading the Saturday papers (Unlike in the UK, it's the Saturday papers in Oz that are huge with magazines and lots of sections, while the Sunday papers are utter crap!) And I'm listening to Charlotte Church (Welsh soprano) on my iPod - lovely!

My mum arrived on Friday from NSW, so she's been in here each day since then. Coming this afternoon. Hopefully we'll both drive off home to Kholo countryside tomorrow. Yesterday she and my aunt collected my pussy-cat Mieke (she who is sleeping on the ironing board in the photo on the right!) from the expensive cattery and took her home to Kholo, set her up with food, hidden entrance to the outside, where I'm sure she'll be much happier on her own for a couple of days!

On Friday night 3 friends from Woodford (annual music festival) came to visit. I really like them but somehow we don't usually see each other during the year, just come together in a big group to camp together for 8 days from Boxing Day, and to volunteer and/or enjoy the music and other amazing things that happen at the Woodford Folk Festival. We had such a great time on Friday evening, catching up on what everyone had been doing, and talking about this and that for hours. Had a great long conversation about that wonderful film The Queen (that Helen Mirren won the best actress Oscar in for her portrayal of Queen Elizabeth II during the week of Diana's death and funeral). That was one of the best films I've seen all year I think - the whole thing rang so true! And seeing those excerpts from the funeral again - so moving.

There was one thing that I remember striking me as utterly medieval during the actual TV coverage of the funeral (which I was of course locked onto that whole day 10 years ago!) And that was when the funeral car was taking her coffin out of London to where she would be buried. And thousands of people lining the route out of London, and throwing flowers down on the road in front of the car ... You just know people did that sort of thing back in the 1400s on occasions such as this!

Anyway - not much medical news to report (thank goodness!) My white blood cell count is rising though I don't know what/where it is. When the weekend doctor did her roundz yesteday and said 'any questions' I forgot to ask! But I will today!! I'm not expecting to go home today, but I am expecting to go tomorrow! (Hope I don't get disappointed!!))

Dignified ... ?!

I really like my doctor. He's human, but reserved. I think we're getting to know each other. I can make him laugh, and tell him interesting stories.

I wonder if this is a human thing - to try and 'seduce' people into liking you by leaking out bits of intriguing information?! Not saying this is a calculated thing, but I have observed myself interacting with him, from the beginning when he was distracted and flipping pages through my file (in the public hospital I started off in); to now when he comes into my room, and we talk about how it's all going. He saw some DVDs that a friend had brought in, a couple from the Woodford Folk Festival, and said he used to go to that years ago! I think of things I feel I need to tell him, or ask him. And the interaction has definitely changed. Not, I hasten to add, that I am expecting (or even wanting) us to be best friends or anything like that. But - I like him and I want him to like me ... (this could sound pathetic but it isn't, honest!!)

Anyway, we were talking about stuff, like not being frightened of cancer once you actually get it, and how different people take it etc. And he said that I had a very 'dignified' attitude to it all! Now, I could get upset at that. Who wants to be dignified? Sounds far too old to me!! But I understood what he meant!!

I'm now in the 'business' end of the current cycle. my white blood cells have dropped and I'm at risk of infection - no more going outside for walks in the winter sunshine! For the medical readers, my WCC have gone to 0.6, Neuts to 0.2 and lymphs are 0.4. Platelets are still decreased too. Tomorrow I get an injection that should stimulate the white blood cells to get going again. And then it's just a matter of waiting till the levels are high enough for it to be safe for me to go home.

I've also been madly trying to organise (from hospital) a new external hard drive with Firewire connection (I have an older Powerbook so the drive can only boot from Firewire). Having found it at one place, it turned out they didn't have it after all?! But I've found another source and my cousin Audrey is going to pick it up for me this afternoon I hope. (Need to reformat the hard drive on the powerbook and previously have just backed it all up at work and done it there!!)

Finally, the 12th Man. If you're a cricket person, and possibly Australian but I think the 12th Man CDs are known in the UK too - well then you may understand ... Otherwise, you've got no hope! Someone at work lent me the full collection of 12th Man CDs which I put onto the iPod. Basically what they are is a takeoff of the Australian Channel 9 Cricket commentary team. Plenty of material there. So there's all this utterly hilarious commentary from the 'voices' of Richie Benaud, Bill Lawrie, Tony Greig etc. with others such as Geoff Boycott making an appearance too.

A lot of it is incredibly politically incorrect - they make up all these outrageous names for cricketers from the sub-continent - eg DoubelDekka Baas, AhbrakemeAndad, Hesa Hasbeen, etc etc etc. I don't know if this just sounds stupid if you haven't grown up where cricket is played, but really with those stupid commentaries and ridiculous names and outrageous situations all coming through my iPod, I just sit here pissing myself laughing (a nice Aussie expression!) Probably people in the corridor, next room, think I'm mad coz they can't hear anything. And I'm weeping with laughter!!!

bye for now ... :)

white clouds in the sky

That's what I can see out of the window - white clouds moving across a blue winter Brisbane sky ... (Well, I needed to find some sort of title and that was what came to mind, OK?!)

I guess it's time for the next update from me in my (very nice) hospital room ... There was huge excitement here yesterday as the previous evening (Friday) a local football hero has his knee quite badly injured in a game up north, and he turned up here (with accompanying TV and media scrum) to see the specialist, and presumably arrange for a(nother?) knee reconstruction later in the week! I'm not a follower of Rugby League - the only football I have even a passing interest in is soccer, and readers of my other blog will know that I do follow the cricket! in the summer. But that's a summer game ... Football just doesn't do it for me!

Of course, in most countries of the world, football == soccer. That's what they mean when they talk about football! But in Australia they developed variations on Rugby (Rugby League) and Irish football (Aussie Rules), so it's called soccer here!!

Why am I talking about football?!!!

Anyway - to my health situation! Turned out I actually finished the first lot of chemo on Friday. Since then I have been off the dreaded steroids - resulting in me sleeping for 9 hours last night, as opposed to 1-2 on the previous ones! But the steroids probably also kept me feeling a bit more 'up' than I was. Since then I have been pretty quiet, happy to sit in my room and play sudoku on the laptop, read emails, books etc. Not going wandering off downstairs or anything. The doctor says that although I won't get back to my regular energy level, it should even out a bit higher soon. I'm also less interested in eating, though maybe it's more the idea of eating, than eating. I look at what I've got and if/when I try then I can usually quite happily eat some of it. All that fluid weight has dropped off thank god!

Friends drop in and visit - luckily no more than 1-2 at a time. I couldn't cope with a roomfull that's for sure! John came round yesterday - he'd gone to my house to collect his wife's car, and supposedly to bring me some things from home but had left the keys in a different car! He told me a case of wine had been delivered which is a pleasant surprise! Someone who's going round today to water my plants will hopefully be able to take that inside ... (Thanks Georgina - I know you're reading this!!) John also brought me the Peace is Possible book to read which was great!

Anyway - that's it for now. more later ... :)

2nd post from hospital ...

(hooray - finally I can put in a title properly!!)

So, I've been here for 3 days. 3 day of chemo being pumped into my veins (poor veins, but all in a good cause!) I'm actually attached to 2 drips 24 hours a day. One is continual - something called Mesna which is to protect my kidneys from the ravages of the chemo. And the other is the chemo for 2 lots of 3 hours in every 12 hours, and otherwise saline. The treatment lasts till Saturday - 5 days (the actual chemo didn't start till Tuesday). Then I have to hang around in hospital for another week or so till my white blood cell count comes up enough for my specialist to let me escape for a week!

I have 2 sisters living in London and Dublin. One is a nurse (London) and the other a medical research doctor (Dublin). Both are demanding lots of medical details so I will try and satisfy you! But not having a medical background myself I don't keep many of the details in my head. Although I already know a lot more about cancer and lymphoma and non-Hodgkins lymphoma than I ever did (or wanted to!)

And for yoga people - I'm busily eyeing up the room working out where I can put my mat down when I come back for the 2nd cycle. I won't be able to do much in the first week when I'm hooked up, but hopefully in the 2nd week I should be able to - depending on how I feel I guess. The doctor told me that the 2nd (and 4th and 6th) cycles are more intense in that they target the bone marrow, and so I am reasonably likely to get a fever some time in the 2nd week of those cycles.

Right now I'm still feeling fine overall. I'm having trouble sleeping - that's because of the steroids I have to take every day while the chemo happens (10 tablets)! As I lay awake at 3am this morning I had the happy thought that perhaps as well as keeping me awake, maybe they'd be building up my muscle mass as well! But alas, not!! No good side-effects that I can see!! I can't imagine how anyone could want to take them!! Apparently my iron levels are down too, but not enough to have to get a haemaglobin transfusion.

And putting on weight - when I read that YC put on 10 pounds when she had her chemo I was horrified - after all the effort I put in at WeightWatchers a couple of years ago to lose 30 kilos. Well, they weight me every morning and I've put on a kilo each time!! Today I came down a bit but ... I am promised it's all the fluid dripping into me. Did you know that a litre equals a kilo in body weight?!! And they will make sure I lose it all again!!

And I promised Roy (in response to his comment) that I'd tell you about the presents (see 1st post), or lack of them!! I thought I was so together last week writing lists and putting things to bring with me in piles on the bedroom floor. Then on Sunday when I packed my bag I put it and my clothes on the bed, packed them all, looked at the list I had written (at the beginning of the week - things like phone charger, ipod charger, internet connection) and packed them. And totally ignored the bag of carefully chosen presents, the Pride & Prejudice DVD, Evening Primrose Oil capsules, radio alarm clock, etc etc - which had been in full view, and which I had stepped over to get my clothes!! Anyway, my cousin is going out to my place (45 minutes drive) to pick them up for me today - thanks Audrey!!

This is getting long - I'm gonna stop now ... I'm so glad Julie has put this onto the Ashtangi.NET blog list - I'll try to post about yoga too, and not let the medical stuff take over completely! Because I really don't want it to take over my life!! And like I said on the ashtanga board, I want to go back to my other blog and leave this one when the NHL has left me!!

:)

I survived my first night in hospital!

OK, here I am in hospital sitting in a chair next to a sunny window with views over inner city rooftops! And the chemo is being dripped/pumped/whatever into me. Crossed fingers - no ill effects yet! I've been given anti-nausea drugs too so hopefully that will take care of any sickness ...

Yesterday I went to have the porta-cath put in. Although I was nervous about that, it was fine! In fact I spent a lot of time in the X-ray room (where it was done) laughing and joking with the nurses! And this was before they gave me the 'happy drug'!)After that my aunt and cousin picked me up and drove me, plus all my 'luggage', to the hospital where I am now for the next few days. I had the mabthera (monoclonal antibody therapy) dripped into me yesterday afternoon and evening. They up the rate every few minutes, and when they got to 140 (140 what I don't know!) I suddenly got really cold and shivery - my teeth were chattering uncontrollably! So they slowed it back down to 100 and that was fine. And that is the only 'untoward' effect I've experienced so far! Long may that last!!! (But I don't really have the illusion that the whole treatment will be a dream ... far from it! just enjoying it while I can!)

As you can tell I am able to connect to the internet - although it is only dial-up. But that's better than no connection, for sure! And having spoken to the doctor who put the porta-cath in, I believe I will be able to do yoga! I asked him if I could do inverted poses and he said I could do anything! It's actually sealed under my skin (when the cut heals). He said I could swim and everything. So I'm expecting to be able to bring my mat in next time!

Someone said in a comment on my other blog that I was/am an inspiration! Have to say I don't see it like that! Probably everyone who goes through something like this gets an inner strength they didn't know they had. Coz I don't feel like I'm being brave, or strong or anything special! It's just - this is what's happening in my life now and I'm just dealing with it as best I can ... :)

Anyway - that's enough for now ... as I'm stuck in hospital for 10-14 days I'm sure I'm going to be blogging a lot, to relieve the boredom!

first post

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

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

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

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

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