I had my first check up back at Peter Mac. It felt like a step forward and although it's not the cheeriest place it is smaller and warmer than the Royal Melbourne I did feel a bit sentimental going back there. It was also nice having the cafe I like up the road . I arrived a bit earlier so we could have coffee and muffins before I went in. I had my intragram in the apheresis clinic (apheresis mean "to take blood away, apparently}. It took 2 and a 1/2 hours. Now that I don't have the hickman line I had to have a canula inserted. My veins were hiding and it took 2 painful attempts to get the needle into a vein. Mum kept me company for most of the time which was nice. Unfortunately I couldn't crochet because the needle was in the bend in my arm and I had to keep it straight. Every time I bent it the alarm went off on the pump. By the time the infusion was finished it was time for my clinic appointment with Dr Ritchie. Mike and Alfie had come back from their shopping trip by then, so we all went in together. Yvonne, David Ritchies assistant, saw me first followed by a brief appearance by David. My blood tests were fine and apart from a few minor problems everything is fine. My prednisolone has been dropped to 10mg and my tacrolimus to 1mg. It was nearly 5pm by the time we left. We stopped on the way home for fish and chips (yahhh, I can eat fish and chips) and got home about 7.30. All in all it was a long but eneventful day.

I have started studying again, just one accounting unit. I have only just started but feel much better about it than with my last couple of attempts. I am able to concentrate for longer and it's not such an effoft to motivate myself to do it.

I had a lovely walk to today. The weather is wild, woolly and windy. I walked with Milly along the beach in the icy cold wind and it felt great. Tomorrow I turn 45. Just for something completely different I thought I'd like to attempt walking the 5km around Churchill Island, if the weather's okay. I have also been promised a game of settlers of Catan. If the weather's not so good, it might be settlers all afternoon .... it is my birthday after all. Mike is working in the morning, so I thought I would take Alfie and Hetty to San Remo and peruse a couple of lovely shops there and have coffee and banana bread at Nude Foods. Hannah is coming down on Tuesday so we'll go out for dinner then with Judah and Tim and kiddies to celebrate Hannah's and my birthdays.  Yep, life is okay ...

I wrote this entry a few weeks ago, but when I went to post it it disappeared and I got an error message. When I logged in today I found the draft had been saved, so here it is:

Yes, I have had my one-year transplant birthday - 27 June. It has been a hell of a year, but I am so pleased to be through it and out the other side and feeling okay.

I had a check-up a couple of weeks ago. Everything was fine, my counts are good. My albumen was up to 32. I saw Dr Ritchie. What he said was very encouraging, and I don't have to go back for a whole month, which was very exciting. I will also go to Peter Mac next time, which hopefully means no more day centre and which will hopefully not take as long. My prednisolone dose was dropped slightly to 12.5 mg a day. I will stay on that dose for a month, and it will go down very gradually to avoid any problems. Dr Ritchie's feeling is that I won't have more problems with GVHD. He said there are 3 patterns GVHD usally follows: an acute attack which clears up completely and doesn't return (which he feels is my case); an acute attack followed by chronic GVHD which is difficult to clear; or no acute GVHD but chronic GVHD which occurs later, perhaps a couple of years, after transplant. Dr Ritchie said my GVHD was definitely acute, even though it occurred after the 100 day mark. He said this cut-off is not so relevant any more. He was also confident that the GVHD has cleared completely. He thought the skin GVHD was probably a reaction to having my gall bladder removed. I know there are no guarantees but it was very encouraging to hear as I had been worried about what would happen once I am off the immuno-suppressant medication.

My hickman line was taken out. This felt like a big step, but because I am not going back for a month, it is complicated working out care of the line. It needs to have ethanol inserted 3 times a week. The ethanol is given to me in syringes which only last for 10 days, so I cannot take enough home to last for a month. Also the dressing needs to be changed once a week. I have done this myself, so that is not such a problem, but having the line there is also an infection risk. It has also not worked consistently and given that I have not needed any infusions for over a month, apart from intragram which I am having once a month, it seemed the right time to remove it. I was very nervous about the removal as the last time I had one removed it got stuck and it was really hard to pull it out and it hurt. It also just feels very strange. I had a lorazapan which helped me relax, and it came out the first time. The nurse, Sarah, did it really well and pulled it quickly and hard and I didn't even realize it was out

I had a lovely day on my transplant birthday. We went to the Churchill Island farmer's market. Churchill Island is an historic farm on a little Island off Phillip Island. It was a beautiful Autumn day, no wind, clear blue sky. It is a lovely place, looking out over the sea. We had brunch there and bought Tarago River brie cheese, and yummy sour dough casalinga bread and other nice things to eat. We went for a walk around the Island. We didn't make it the 5km around, probably about 2, which left me exhausted but satisfied.  Back at home I sat in the sun with Hetty and ate bread and cheese and spent a lazy afternoon watching telly. I did go for a walk on the beach as well with Mike, Alfie and Milly, so ended up doing quite a bit of walking.

Meanwhile day to day life continues. I have been going to the gym where I do about a 30 minute circuit, mainly working on increasing strength in my legs. I try and walk every day, although some days it doesn't happen. I am doing things around the house and can do most of the cooking and shopping. I guess life is not very exciting at the moment, but that is fine with me. I am trying to take things one step at a time, which is tedious, but I am trying to avoid getting stressed or hassled by every day things. It is school holidays, and Aflie and I have been going for walks, going to the skate park and the opp shops, and just spending time together. It has mostly been really nice and I feel I am connecting with him again. He had his 7th birthday on 12 June. We had a party at the Melbourne acquarium with his friend Reuben who turned 3 on the same day. He is so grown up in lots of ways, and he has learnt and grown so much while I have been away. I think it is harder for him dealing with all of this now that I am back as it seems like now I am back he has realized he has missed me. He has been very clingy. emotional and possessive and gets very cross with Mike over little things. I am trying to spend time with him and give him lots of reassurance. Because I get tired so easily I find it hard to be patient, and I'm sure the prednisolone doesn't help. Alfie told me the other day that he doesn't mind when I'm grumpy because dad told him that it is the medicine that makes me grumpy...

My next appointment at Peter Mac is on 14 July. I will have intragram then. At some point in the next few months I will have a bone marrow biopsy which will hopefully show that I am in complete remission and I will be re-immunized.

I had my review at the day centre yesterday. I arrived at 9.30am and left at 3.30pm. In that 6 hours I had a blood test and my hickman dressing changed. My doctor wasn't there and the registrar, Anna, who knows me, has left, so it was all pretty much a pointless effort. Of course it is great that I don't need any infusions and that I feel fine, but it will be even better when I don't have to spend the whole day travelling and sitting in the day centre. I got home at 6.30pm and the effort knocks me back for a few days afterwards. I couldn't even get prescriptions filled before I had to leave because they hadn't been written up. I know, I know ... I am grateful that the public hospital system exists and I have benefitted enormously from it, it is just frustrating.

They get "chair-locked"at the day centre where people are waiting to go in, but no chairs or beds are available. I waited for an hour to go in yesterday, which isn't too bad, but there were no chairs left in the waiting room and people had to stand. It really is quite depressing and you'd think there must be a better system. I think they were short-staffed yesterday too, so that didn't help.

I didn't even find out my blood counts, but was told they were okay, and I was itching to get out of there so we could head home before the traffic got too bad. We were on the freeway by 4pm and the traffic was very heavy. Next week I booked in at 8.30am - figured I might as well get up an hour earlier and drive in and hopefully it won't be as excruciating as yesterday.  Judah drove me in so I really shouldn't complain - I just feel bad about Judah having to drive in the traffic. Tim cooked us a delicious chicken pie for dinner and picked Alfie up from school - thanks Tim.

My prednisolone was dropped by 5mg to 20mg. The test will be when I get down to 5mg or less to see if the GVHD will stay away.

It's been a long time since I have posted.  I just didn't feel up to it, and then when I finally got around to it, I couldn't get access. But here is an update on what has been happening since March.

After my last post I continued to feel unwell, on and off, with some vomiting, no appetite, and nausea. About 4 weeks after I'd been home a pain in the right side of my back started, near my ribs. By Saturday night it started to get worse and I was unable to get comfortable or sleep and was also vomiting. Michael called an ambulance about 11.30pm and they arrived 5 minutes later and took me to Wonthaggi Hospital. I vomited again there.  They were very concerned in emergency about me being exposed to infection. I told them I had recently had GVHD, and my history and kept asking if they had rung the on-call haemotologist at the Royal Melbourne. They didn't really know what to do with me and I heard them saying that I was in with GVHD. I tried to explain that this was different that I didn't know what it was. They kept giviing me morphine, but it didn't seem to alleviate the pain. Eventually they did ring the Melbourne and arranged to have me transferred there. I left Wonthaggi about 6am. The ambulance rides were hard as I felt every bump on the road.

At the Royal Melbourne emergency, I was given x-rays and an ultrasound whiich showed gall stones. The radiologist said my gall bladder wasn't inflamed and he thought they would treat it with antibiotics, not remove it. I was transferred later in the morning back to 5 East. I was so relieved to be going back there, not to a different ward, as at least they know me there and I have my own room. The surgery team came in at some point and said they would remove my gall bladder hopefully that night, Sunday, or Monday morning. I was surprised, but they were quite definite that this was the best thing to do. Meanwhile, my pain was being controlled finally, and I was pretty comfortable. The surgeon came in about 11.30pm to see how I was doing. They had had several trauma cases requiring surgery which take priority and he wanted to know if I wanted to have surgery about 1am or wait until the morning. Because I was quite comfortable and because the surgeon's observation "you don't want a tired surgeon ..." made sense I figured I'd wait until he'd had a rest - and something to eat, as I figured a hungry surgeon wasn't ideal either! The surgeon said it could be a tricky opeartion too, depending on how adhered the gall bladder is to the liver. So I had a toasty at midnight (yes, the BMT ward has a toasty maker - very important equipment to have, I think) and then started fasting again.

I had to shower with antiseptic wash, and headed off to surgery about 11am. I was quite looking forward to being unconscious actually as I was really tired. It took about an hour or so to do the anaesthetic preparation. I drifted in and out of sleep. The anaesthesia team were all really nice, and the anaesthetist talked me off to oblivion in this play school sing song voice that made me want to giggle, but was also reassuring and soothing. The anaesthetic really hurt as it went in my hand, but not for long. Coming out of the anaesthetic was horrible - I hadn't had that problem in the past. I was really confused and in pain and I kept saying "where's Judah, where's Mchael - have you rung them ..." and feeling disoriented. When I had been inrecovery after other procedures I heard people moaning with pain, which is what I was doing, but it was more the confusion that was distressing. I didn't sleep much that night - watched half a season of the Gilmore Girls. When I saw the surgical team again I was told my gall bladder was very inflamed and would probably have burst in the next couple of days so I was greatly relieved that it had been removed as a burst gall bladder would have been disastrous for me. They were able to remove it using key hole surgery although the surgeon said it was a bit tricky as it was quite stuck on to my liver. I had 3 small incisions in my stomach with a drain from one.

Unfortunately they forgot to open the drain, so nothing was draining from the wound. The following afternoon, Tuesday, a nurse realized it wasn't open and unlocked it. There was a sucking noise and I yelled as it was really painful. Nurses came running and I was given a bollus of pain relief. It abated after a while, but boy it hurt. But at least it was fixed and the drain was working. The drain was removed on the Wednesday, I think, which was also a traumatic experience as the stitches holding it in were really tight and the nurses couldn't grip them. The resident ended up removing them and taking out the drain which just felt horrible - like my insides were being pulled out. But once the drain was out, the relief was almost instant and the pain abated quickly. i was able to wean off the intravenous pain relief on Thursday and was on all oral medication by Friday, ready to go home on Saturday!

I mainly lived on crackers and fortisip for the week. I ordered a couple of hospital meals but couldn't eat them. I was nauseous and had diarrhea. I was a bit concerned about these symtoms indicating more GVHD, but it was felt there were enough other reasons for them and the team was confident it wasn't GVHD. They thought the nausea was due to the anaesthetic and the diarrhea to the surgery - upsetting everything. I was just worried I wouldn't be able to go home and that it would drag on and on like last time. But it was all okay, and I was just so happy when Michael and Alfie arrived to take me home on Saturday. After a couple of days of rest I felt like a completely different person. The change was amazing and I'm assuming my gall bladder had been niggling away for a while, explaining why I had been feeling unwell. The wounds healed well and I just felt better in myself than I had felt since before transplant..

About a week after I'd been home, a rash developed over my whole body. I rang the BMT ward and spoke to the registrar and arranged to come in to the day centre. This was demoralizing and I was worried that I would have to be admitted again, but Anna was confident it could be treated from home. Once she saw the rash she confirmed it was GVHD in my skin. Apparently liver GVHD and skin GVHD go together frequently, but my liver function was fine, so that was a relief. My prednisolone was increased to 50mg a day and the rash cleared after a week. It was uncomfortable, but manageable, and I was just generally feeling so much better it didn't get me down too much.

So that it what has been happening since my last post. The weather here has been beautiful - perfect Autumn days, fog in the morning, lying low on the ground, followed by sunshine, crisp clear air, and no wind. I have been walking Milly on the beach, or she has been walking me, and I have had one visit to the gym. It is slow progress and I have had days where it's been a struggle to do anything, but also days when I feel good and normal. My appetite has gone the other way, thanks to the prednisolone and I am eating voraciously! Still low fat, but I am enjoying eating and can eat most things.  I haven't tried curry, or fish and chips yet, but seem to be fine with dairy. And it's just so exciting to feel hungry! I have had a little bit of chocolate, too, which is a very important part of a well-balanced diet I think, especially nice dark chocolate.

I have put my name down to do voluntary work at the school library and the local training centre, so hopefully something will come of that. I am still finding my feet in terms of confidence in dealing with the outside world. Mainly it is great to be at home with Michael and the kids, although my patience needs working on - especially when I'm tired. I've been cooking and doing domestic-type things, which is fine for the moment. I don't know what's up ahead, but for now I do feel like I've turned a corner and things are looking up.  My BMT doctor said last week he is hopeful my next bone marrow biopsy, which will be in a couple of months, will show I am in complete remission. Here's hoping.

I'm at the start of my second week at home. I went to the day centre on Wednesday. My magnesium was low, so I had a 4 hour infusion, which made it a long day. But all my blood counts were good. My haemoglobin was 102 which is the highest it has been for ages. I will go back the next 2 Wednesdays, and hopefully after that it will be a bit longer between trips.

It has been a big adjustment being at home. It is fantastic to be here, and to be with the kids. I just need to get the right balance between being active and not over doing it. If I am on my feet for too long the abdominal cramps start and if I get too tired I don't cope very well generally. I have driven the car a couple of times, just locally. It was a great feeling to have a bit of independence. I won't attempt the drive to Melbourne for a while yet, though. My prednisolone dose is down to 20 mg a day, and will be tapered off each week. I have lost alot of fuid  - huge relief. My face is still puffy, and my knees and ankles (a great look!) but I am much more comfortable.

My eating is going okay. I still have days where I can't eat much, apart from crackers, but Jackie, the dietician at RMH, said not to worry about that, to have extra fortisip to compensate. My diet is pretty much low fibre, low fat, no dairy (except a little bit of tasty cheese), no spices .... so it's pretty limited, but I don't have much appetite, so mostly it doesn't bother me. The main issue is remembering to eat and trying to eat enough protein. I have been grilling a piece of fish some lunchtimes, and having it wrapped in a tortilla, which seems to work okay.

Semester 1 starts next week. I am enrolled for one accounting unit, so I will try to get stuck into that.

Yes, finally, after almost 3 months, I am at home. I arrived back on Saturday, after packing up what turned out to be alot of stuff after 3 months of collecting games and DVDs. It was fantastic to be home.

I have felt pretty tired yesterday and today, and frustrated at not having more energy to do anything much. I had alot of stomach cramps yesterday which I think may have been beccause I'm not used to going up stairs, and we have a few in our house.

I go back to the day centre on Wednesday. Hopefully I won't have to stay too long. I know I will be having a transfusion of bone strengthening stuff, I can't remember the name of it, as my bone density has been affected by both the chemo last year and the prednisolone now.

Anyway, the main thing is I am home. I am extending the range of vegetables in my diet. Tried a bit of tomato yesterday, and sweet potato today. I might try a green bean tomorrow!

The main thing though is I am back at home with Mike and the kids. Alfie keeps asking when I'm going to go back to hospital. He doesn't seem convinced that I don't have to go back to sleep. I sure hope I can stay well.

Saturday 21 February, yes four more nights here and all going well, I will be GOING HOME!!!  I am pretty excited about it now - things have been going well, but I will believe it when it actually happens. When a nurse said to me I'd been here since November I couldn't believe it had been that long. I don't have the date I arrived, but it will be around a three month stay ..... way too long. And I can go straight home. I will have weekly visits back to start with, then, all going well, of course, I will see my consultant, Dave Ritchie, at Peter Mac.

I had 2 consecutive nights of overnight leave on the weekend - Saturday and Sunday nights, which was fantastic. Mike was working on Saturday, so I did some cooking at my parents house - a week's supply of little meals to keep in the freezer at the hospital as I am still avoiding hospital food. apart from sliced peaches and lemonade and the fortisip which I drink two bottles of a day. Mike arrived about 6.30pm with Alfie and Hetty. On Sunday we had a big extended family outing to the museum with us, my parents, my brother Graham, and his partner Susan. We were quite an entourage with the wheelchair and a walker and we had a picnic too. It was a really good day. We stayed at my parents'  house again on Sunday night. It was hard to go back to the hospital, but at least good news was waiting for me.

My albumen level on Monday went up to 29. Ideally it will get to 32 or above, but it is steadily increasing, which is a definite sign that I am getting better and that my body is absorbing the protein I am eating. This morning there was some concern about my haemoglobin levels dropping, but after doing a repeat blood test, the results came back significantly higher, so they are putting the low count down to error, so I avoided a blood transfusion.

So right at the moment, things are looking pretty good - four more sleeps to get through, four more days. The TV aerial isn't working for my ward either, so there's no TV reception - a definite sign that it is time to leave! Fortunately I have plenty of DVDs to keep me occupied. I have just finished re-watching We can be heroes - very funny. I have got through four seasons of Red Dwarf, and am working my way (boy it's hard work!) through Seinfeld, Absolutely fabulous, Black adder and Northern Exposure. And then there are the scrabble games with my mum who comes in nearly everyday.

I finally seem to have turned a corner and what I am able to eat is steadily increasing. I am having a protein supplement drink now which helps boost my calorie intake and I have tried fish, chicken and turkey. The cruskits are still a big part of my diet, but I have even found that they are not filling me up and I have even been hungry!!! Part of it is getting back into the habit of remembering to eat as I am trying to eat small amounts more often.

When I will be discharged and whether I can go straight back to Phillip Island or stay in Melbourne will depend on how much, if any TPN top-up I need to supplement what I am eating and what my digestive system is able to absorb.

Meanwhile I am feeling so much better in myself, which is a good feeling, and I don't want to get home and not be able to manage and have to come back again. My feeling is it will be at least another  week and a half, but after 2 and a half months of being here, a couple more weeks doesn't seems okay. It will get harder to organise food, as I just can't get my head around eating the hospital food, apart from the jelly and tinned peaches. Oh, the little packets of vegemite are okay too!

I can try a bit of tasty cheese on Friday, which is very exciting and will expand my options - NOT THAT I THINK ABOUT FOOD MUCH!! NOT. But it is a central part of this part of the process so it's hard not too,and I'm still a bit tentative about a set back, so no doubt have a bit of a mental block about  how far to push myself. I figure it really depends on the rate my large bowel is healing (the biopsies show no sign of GVHD - yaaaaaaah), so forcing myself to eat more isn't going to help that. It's

Finally looks like I am making progress and starting to let myself  believe that I will get out of here! It is just so slow which is extremely frustrating. Had a colonoscopy last Friday and things are looking more normal - my bowel is back to normal size and not looking inflamed. I am still waiting to hear back on the more detailed results, but I am feeling much better, so hopefully goodbye to GVHD for good.

I am now in the process of coming off intravenous medication, changing to all tablets. Today the last medication was given in tablet form, so now I only have to be attached to the drip overnight to have TPN (ie. food). I am up to 3 cruskits with vegemite a day and had 3 pasta noodles (yes - 3!) without any dire consequences. Also, because I am feeling ok, it looks like the oral medication is being absorbed - good sign. Tomorrow is the potato challenge! I will try one little piece of potato - I am allowed to put salt on it, so that's something. The dietician suggested just trying tiny amounts to start with, and sounds like a plan to me. I am very apprehensive about pushing things and going backwards again. I don't have to be eating normally to leave hospital as I will be coming back in 3 times a week to the day centre when I leave the ward, so I can have TPN topups.  It is good the pressure isn't there to rush things.

Emotionally I feel okay at the moment, but I miss the kids so much. It has just been too long away from them and Mike. I have been up and down, but am trying to stay motivated and build up my strength a little bit. I get tired so easily. I went for a walk today, outsided - even got dressed but could only make it a little way up the street before the abdominal pain started up. But I guess it is a start. I have some exercises from the physio to do too. It is just getting myself motivated that is the challenge - today was a good day, but some days I have felt so sluggish and down I can't make myself do anything. Focus on the good days hey?

Still in hospital. I had a setback on the weekend with vomiting and diarrhea, which has passed but was bad timing as I was also just really tired and couldn't stay awake when Mike and the kids were here. But I'm feeling much better now and am eating cruskits with no dire consequences, so hopefully the weekend was a glitch and I am back on the recovery road.

Tomorrow I will have my central line removed and a Hickman line inserted. An infection was found in the central line and it has been in for about 1 month, so the feeling is that is long enough and I might as well have a Hickman. It will be easier to manage, can stay in longer and I won't have the tubes sticking out the side of my neck.

Then on Friday I will have a colonoscopy so the docs can see the situation clearly and check that if there is any remaining GVHD or whether my slow progress is just because my bowel is taking a long time to heal. I need to fast for both those procedures, apart from drinking the solution I have to have before the colonoscopy (yum yum), but it wll be good to know exactly what the situation is.

Oh, sore stomach, time for a lie down.

Just a quick post as finally it looks like things are improving. I had a CT scan a couple of days ago that showed my bowel has reduced in size and it's all looking more normal. So now I am into "gut challenge" phase day 3. I started with jelly on day1, had a cruskit yesterday and a cruskit and some jelly, not together, ha ha, today. I have had abdominal cramping after each attempt but I figure that I am going to get some reaction no matter how long I wait, as it's been 5 weeks pretty much without eating. So, depending on how my gut copes with digesting food, I'll gradually introduce other food until I am getting enough nutrition without the TPN (fake food). If it doesn't cope then I'll have to have a break and give it more time to heal. But at least there is some improvement - felt very very good about that.

So here's to 2009. One of the nurses said today that 2009 is going to be a good year, based on the Chinese calender, I think - goes in 7 year cycles?  or was it 9. 2008 was the last year of a cycle and that is the worst year, and the 1st year of the next cycle is a good one ...

It has been ages since I have posted here.I keep thinking I will do it when I get home,but I'm into my 4th week of being back in hospital, yep back in hospital and probably another 2 weeks to go,so figured I'd make the effort. So, here's what's been happening:

Everything was going along really well- happy doctors, I was staying at BMDI house, then got to the point where I could spend a week at home. Then to the point where I could spend 2 weeks at home, which is when things didn't go so well. I even had my hickman line removed. I was eating, small amounts, but could mostly join in with whatever meal was happening

I had been getting some abdominal cramps which made me wonder about graft versus host diseases (GVHD). GVHD is where the my donor stem cells attack my body. It can occur in the gut, eyes, skin, liver. Then about 4 weeks ago the nausea was back, but I could eat cruskits and still take my medication. Things got steadily worse so that by Sunday I couldn't keep anything down. Mike took me to Wonthaggi hospital on Monday where I spent most of the day in emergency on fluids. I was transferred to the Royal Melbourne on Monday night and spent a couple of days on the infectious diseases ward in case I had gastro. Once that was ruled out I was back to 5 East, where I had my transplant. I am in a different room. It is smaller, but brighter. I was relieved really not to go back to the old room - no difference really, I know, but going back to hospital at all hit me for 6, let alone going back to the same room. Right up to leaving to go to Wonthaggi and when it really was clear that things weren't right, I kept thinking "I'm not going back to hospital" .... psychologically it was really hard.

I was started on high dose steroids - 125mg prednisolone and various other meds, but I didn't get a good response. I wasn't getting worse, I just wasn't getting better. Meanwhile I had various other side issues occurring. My veins have become very good at hiding, so putting canulas in was really hard and painful and after 1 doctor tried 6 times to get one in, and because of my lack of response to the treatment, it was decided to put a PICC line in my arm, which is a line going into a vein that goes right around to near the heart. This just didn't work very well and ended up with a clot in the vein around the line, so that had to come out and a central line put in my neck. This looks weird as all the lines go from my neck to the intravenous pole. But it works well, and feels alright. It's not that different to having the hickman line, it just looks strange.

Then there was the colonoscopy preparation. I agreed to participate in a trial where you swallow a capsule with a camera in it. They stick these things all over your stomach that take pictures as the camera theoretically moves through the digestive system, the aim being to get images of  what's happening in the small intestine. Except that my camera wouldn't move out of my stomach. Meanwhile I was supposed to be drinking 4 litres of nasty stuff to prepare for the colonoscopy, but I couldn't drink while the camera was still active. I had to wait until 6pm for the battery in the camera to go flat. Which meant I had to drink this salty solution through the night and the next morning. I was told a 2 hour gap between finishiing the 4 litres and having the colonoscopy was enough but ..... due to a communication break down, the anaesthetist hadn't mentioned that there had to be a 6 hour wait because of the sedatives given before hand, so they said they couldn't do it. This might not sound like a big deal, but after forcing myself to drink a litre in 30 minutes, feeling sick, (way to much information, but the liquid cleans out the bowel- say no more, right?), I found it all really stressful and difficult to deal with. I eventually had the colonoscopy and GVHD was confirmed in my bowel.

The next strategy was to have 3 days of pulse steroids where the dose was upped to 400mg a day, which really messed with my head - very agitated and irritable, and they also made me want to eat. At that point I was put on complete gut rest, with no eating or drinking. I hope this isn't too confusing to read. But if I say I am into my 4th week here, I feel that pretty much says it all. A decision was made last Wednesday that my response to prednisolone had plateaued and a new approach was needed. I am now having ATG - can't tell you what it stands for, but it comes from a horse and targets the donor T cells. It is very immuno-suppressive and effects platelets. I had a platelet transfusion yesterday. Pre-medication of panadol and phenergen are given to prevent any allergic reaction, but I have tolerated the 1st 2 treatments with no reaction.

So it has been a very slow and tedious process. If I had responded initially I would have been out in a week- bad luck, I guess. This has hit pretty hard really, even though the GVHD possibility was always there. It was just so out of the blue when things were going so well. I have been told it is very common for people who have an unrelated donor usually end up back in hospital at some point for some reason, but it has been an emotional rollercoaster, not to mention boring and tedious.

I was told this morning that I need to get more active as my lung function could be better. I have been spending a fair bit of time reclining, because of abdominal cramps, but I resolved this morning that I am going to need to make more of an effort - really don't want to risk pneumonia. This doesn't involve a great deal of effort on my part really, except that I am supposed to sit in a chair as opposed to on the bed, which may not sound huge but I have my pole with 3 pumps, fluid, fake food to take everywhere with me, plus there is my lack of ability to exercise consistently anyway. But I am sitting in a chair as I type and I go for a walk down the hall a few times a day. Maybe they need like an exercise yard for the inmates ....

Meanwhile the steroids have made me blow right up- I look like Augustus Gloop from Charlie and the Chocolate factory. I have the big round face, double chin, huge arms, my legs are at least twice the size they were 4 weeks ago and my feet and puffy and swollen not to mention my stomach. This is all retained fluid I know, but it is rather incongruous that I haven't eaten for 4 weeks and am 15 kg heavier. This will go I know, but makes the getting around very cumbersome and makes me feel sluggish.

I have been watching alot of DVD's and TV. I have got through the 1st 7 series of Friends, which just seems to hit the right spot. Also some Seinfeld and Northern Exposure. Plus a few movies friends have brought in. I am completely addicted to Friends and have started pacing my access to it because I can't bear that it is going to come to an end ... sad but true... indicator of the size of my world at the moment. I do have a couple of knitting projects on the go, but not reading much. I am on a constant low dose of morphine for the cramping too. I do doze a fair bit and have temazapan (?) to help me sleep. Speaking of which I am drifting off now.

Christmas day will be in hospital, but we have a plan, and I just keep thinking as long as I have the day with Mike and the kids, that's the main thing.

My magnesium was .7 today which is the lower end of normal. Normal is .7 to.9. That was after a week of taking tablets. They had given me extra magnesium anyway because it had been ordered,but I actually didn't need it! Hopefully the trend will continue. I don't go back to day centre until next Wednesday!!!! But I have a few day 100 appointments, so I can't go to Phillip Island this weekend.


But I have just spent 4 days there which was lovely. Saturday was warm. I lazed around, played with Alfie, watched TV (of course) and slept alot. The main thing was I didn't get sick which was really encouraging. I was a bit dehydrated this morning. I don't like hot drinks much so herbal tea is out, so I'm drinking gatorade, cranberry juice, milo with soy milk, chocolate up and go for breakfast and a bit of water. But its a struggle to get to 200l. and they all have sugar. I  think about coffee but haven''t felt brave enough to try it.

So everything os going pretty well, touch wood.

it was a day clinic day today. I have been going 3 times a week, but the doctor thought I could skip this Friday. I'm not sure what I will do yet. I am going to go back to taking magnesium tablets to see if they will keep my levels high enough. If it works it means my hospital visits will be much faster as I won't need the 2 hour infusion and it means I am 1 step closer to GOING HOME. The doctor saiid it could be 3 weeks to get the magnesium stable, but this is an educated guess, so I'm not banking on it, but at least its not too far away.

The results of my bone marrow biopsy show some CLL cells. I was pretty disappointed, but apparently this is very common and the plan is that the donor cells will attack the CLL cells and kill them off. This is done by gradually lowering my cyclosporin tablets (Immuno-suppressant) to encourage the attack. The problem is if they attack other organs as well (graft versus host disease). Sp it's a bit of a balancing act with the medications. But the doctor said it was a good result so I will go with that.

Overall things are going along., bit slow for me, but the nausea and eating issues are much improved, so that's encouraging.

Life in "post-transplant land" is going along steadily. My counts continue to hold strong, but I usually have top up of magnesium and fluid. Exciting news! Dave Ritchie said in a few weeks,  if all continues to go well, I could cut out my Friday hospital visit and go home for 5 days - that sure made me smile! All a matter of wait and see of course.

I thought you would all love to know my daily drugs list, so, as a special treat, here it is:

Cyclosporin               2 x 100g                        to prevent GVHD
Aciclovir                       3 tablets                        to prevent viral infection
Fluconazole               1 capsule                      to prevent fungal infections
Pantoprazole              1 tablet                        to reduce acid secretion in the stomach, for ulcers or reflux
Resprim Forte           2 tabs twice a week   to prevent pneumonia
Prednisolone             2 x 10mg                       to help with nausea and appetite
Domperidone            4 tablets                         relief on nausea
Cyclizine                       3 tablets                       relief of nausea

I was on magnesium but that has been stopped now to ease the load a bit. I find the morning ones especially had to take. My strategy on hospital days is to have them with Up and Go, that way I've included breakfast as well.

Today I had big outing to the supermarket (thanks Susan L) which was a bit overwhelming and exhausting. Soon after we got back Judy arrived for 3 nights. It's been lovely catching up. Last Saturday Mike was here. We went to visit Dad in hospital then went for a walk in the gardens which was lovely but exhausting. I even went out on Sunday to do some shopping,(didn't last long) so I am getting out and about a little bit.

I haven't written here for ages. Mostly things are going well. My counts continue to be fine, and I'm still having bouts of nausea but my anti-nausea medication has been juggled around to give me the most in the evenings when the nausea is usually worse. I did have a good day yesterday,with no vomiting which was a relief.

Well enough of that subject. I am finding it really hard to get myself motivated to do anything, which is why I haven't written here for a while. Everything seems like a huge effort and sleeping is much more appealing! But I am making the effort today - probably need a little nap afterwards ..... My doctor did say that this time is very tedious and slow and can be very frustrating because everything goes so slowly. It is largely a matter of waiting and doing the tedious eating and drinking, But at least everything is on track and I'm heading in the right direction.

I haven't posted for a while. I have been in transition between the apartment and the hospital, staying out overnight, but spending most of the day back on the ward getting infusions. My computer was at the apartment and by the time I had finished for the day all I could do was sit and watch TV.

But as of today I am, well, not quite discharged because my room is being held for a couple more days, but I will go to the day centre rather than have to be on the ward at 8am for ward rounds. I go in next on Wednesday at 10am which is much more civilized. I will have blood tests done and any infusions I need, and probably a bone marrow biopsy.

It has been a funny week, of 2 steps forward, some backwards steps. I ended up staying in hospital on Friday night because my nausea and vomiting were quite bad. Apparently my cyclosporin (immuno-suppressant to stop GVHD) levels  were way to high, I had a break from cyclosporin for 24 hours and I felt heaps better. My dose has been dropped now and I have extra meds for break-through nausea, so I feel armed and ready. The nausea seems to come on quite quickly though. I was really disappointed at having to stay in hospital again, felt like going backwards, but it was okay, of course, and ultimately it's not worth taking the risk of getting sick during the night and having to get to hospital. That has been one of my lowest points. Mike and the kids were coming up the next  day and of course I didn't want to be in hospital, I wanted to be at the apartment with them. I didn't finish on Saturday until 3pm, but it was nice to go back to the apartment and just hang out with them - can't describe how good it was. Time went far too quickly of course. The apartment has plenty of room for everyone which is great. There is a fantastic kids room here with a Wii, air hockey and soccer table.

My current major challenge is to drink 2l of fluid a day - to protect my kidneys, It feels like I have to be constantly drinking to make it. It can include things like yoghurt and soup, but haven't had much luck with soup. I did try a little yoghurt yesterday. I am drinking powerade for the salts and because it is easily digestible, green cordial, icy poles and I tried green tea this morning and peppermint last night. It means I'm eating less because I feel so full with the fluid, but they are more worried about my being dehydrated than what I am eating. So I am concentrating on drinking at the moment. It means less time on the drop and there's the possibility I will have to back to hospital if I can't manage to drink enough, so feels like I'm on a mission.

Safe things I have found to eat: rice bubbles with soy milk, slices of pear, tinned peached, cantelope .... sure there's a few more things. Tiny bits of savoury things. My mouth is still too dry for bread or toast - can't wait until I can enjoy a hot cup of tea and some toast. I have lost a few kgs but lucky I worked hard on my buffer before starting this, so I can afford to lose a bit! I haven't been able to bring myself to drink the dietary supplements -  just have a feeling they are going to be awful.

I woke up this morning after the best nights sleep I have had for ages - only woke up once. I did have a little help from a lorazepan, but if felt so good. I got up feeling almost normal, which funnily enough beats getting up and dry retching which has been happening the last few mornings.

So all in all, things are back on track. My counts are holding steady, and the bone marrow biopsy will show if any cancer cells remain and how well engrafted I am. I have very little energy, but it's just nice to be out of hospital. And ... no hospital tomorrow, so I will have my first day completely free. I still need to sit alot and rest, but feels like I'm moving forward again. The roster has kicked in nicely (thanks Sarah M) Graham stayed last night. Louise is spending the day with me tomorrow and we may go to her place for a bit of an outing, otherwise it's relaxing around the apartment, knitting, watching the West Wing perhaps, writing thank you cards ... Tonight I am hanging with Hannah which is lovely. It is the final of The farmer wants a wife tonight (yes, I watch alot of crap TV) so that's my evening! Oh and it's nearly 7 so time for Friends ...

Just back from my first night of overnight leave at Graham and Susan's. It was just so nice to be in a comfy bed with a snuggly duna. I had to be back at the hospital for ward rounds by 8.30 which was a bit of an effort. It is super ward round on Wednesday's - very big contingent,. They haven't arrived as yet.  I'm back here probably for most of the day. I suspect will be given fluids as I am struggling to drink enough because of nausea. Green cordial is my staple drink at the moment.

I was given the big bag of tablets and a large weekly sorter, with 3 sections for each day, so I have my pills sorted. The worst are the morning ones, just because there are so many of them. The cyclosporin are the worst - very large capsules with a very odd smell. I said they smelt like dung and the pharmacist said they are made from an excretion from a funghi .... I think there are about 10 all together for the morning, but I can take them over a couple of hours.

I have to ring BMDI House this afternoon to check on the progress with the apartment. If all goes to plan I will have one more night of overnight leave, come back here tomorrow morning,, get discharged, then move into the apartment. So touch wood it works out. I'd really like to get settled there and then I come back to the hospital as an outpatient and go to the day centre, which is right next to the ward, but I will be officially OUT.

My counts are stable and the doctors are really pleased with that side of things. I do have some GVHD in my mouth still, but am treating that with diprosone (yukky).

The eating saga is still slow, but I did eat a few cornflakes this morning and am trying to eat a little bit of something every couple of hours. Doesn't seem to be a pattern of what works and what doesn't,. My main strategy is to keep the amounts small. Can't wait until I feel like coffee or a nice hot cup of tea with vegemite toast. My mouth is still too dry to deal with toast, otherwise I would quite happily live on that.

 Another day of leave. Michael has come up for the weekend which is just so great. The kids stayed at home with Judah and Tim. Hetty will be giving Alfie extra special stories tonight. I have to say my kids are amazing the way they are dealing with all of this, with much support, of course, from their dad and Judah and Tim. And I'm sure Milly the dog is doing her bit too.

Anyway, my day out. We went to Graham and Susan's house where I promptly made myself comfortable on the couch. After some chicken soup (thanks Susan) we went for a very short walk down the road. Brrrrrrrrr - very cold. I then slept for a couple of hours, then had some mango gelati and berry gelati - yum (thanks Arlen). It was a very peaceful and pleasant afternoon and it is certainly good to get away from here. I didn't have to be back until 8pm ....very exciting.

Graham went to town and has given me a bag of goodies to try from the baby food and health food sections. Pretty impressive the baby food available now. So I now have a good stock of things I can have a go at, so stay tuned ..... highly exciting I know, and I can't wait to get to the point where thinking about food is not a huge issue, but it's like its my TICKET OUT OF HERE. At the moment I just have to steel myself to eat something then sit very still and hope it stays down. Today I had 4 different things - mushy apple, mushy banana, chicken soup and gelati - pretty miniscule amounts, but managed to keep it down. I'm also swallowing small and medium size tablets - just got to get a handle on the big ones. So Mable has lost some weight and now has 3 pumps instead of 5.

Dave said this morning that he thinks I'll be out in a few days. I haven't heard whether an apartment will be available, but apparently I will go to a motel if I have to wait for the apartment. The idea is that it is much better for me to be away from here. All my counts are good, my mouth is nearly healed, no sign of GVHD (graft versus host disease) - touch wood, so things are on track. I am feeling alot more positive.