Report from doctor's visits (plural!)

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!

busy busy busy ... :)

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

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 :)

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

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 ...

another new start!

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 ...

just standing ...

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 ...

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 ...

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!

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!

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 ...

One third through!

After a really nice 10 days at home, I'm off back to hospital tomorrow morning. And I'm a third of the way through the treatment - hoorrayy!!

It's funny - this time at home I've felt much better and stronger than I did last time. I would have thought it'd have been the other way round - ie. feeling less and less strong as I went. I do wonder if it's to do with the fact that on the first treatment I was having heavy doses of steroids, but none in the second treatment. We shall see I guess - when I go back it's back to the first treatment again ...

I got my mat out and did a little bit of yoga too. But I could only get as far as trikonasana - was just too tired to do more!! (And I didn't do Surya Namaskara B either - I knew that'd be too much!) So that shows that no matter how I think I'm feeling, my energy levels are way wayy down! Strength? What strength!! It's all an illusion!!

I have to eat so much!

A couple of years ago I lost 30K at Weightwatchers - the impetus to finally do something about my weight after having been overweight for 20+ years was yoga! I just couldn't do Marichyasana A (let alone any of the others)! It was fantastic - really worked for me!

But now I'm finding myself in the extraordinary situation of having to eat like a pig - MUCH more than I normally eat, and I'm still losing weight!! The dietician came to see me today and she told me that in Weightwatchers terms, I need to eat 30 points a day! Nearly double what I was eating when I was doing WW, and nearly a third more than I normally eat now. Of course being vegetarian doesn't help (in her view) but I'm now being plied with all these medical protein drinks that contain about 600 calories each! Twice a day!! Plus protein powder into any (vegetarian) soups on offer!

Apart from the constant weight loss, this has also been highlighted by the fact that I have absolutely no b****side to sit on! And my coccyx is getting really paintful I guess I never really addressed this after I finished at WW - anyone have any thoughts on exerrcises to build up muscles in one's backside?

I'm also neutropenic now - meaning I'm open to any infections that are around! Of course this winter is being a particularly bad flu season so I'm having to hope I don't get struck down with that. But I' guess they'll be right onto it as soon as my temperature goes over 38degC.

Yoga - I'm still feeling a bit 'slow' so haven't made an effort yet. I have to remember what the priority really is here ... :) But maybe I'll have a look at the David Swenson dvd and see if there is a short practice that I feel I could attempt - in the next day or two!

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 ... :)

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!!

:)

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.