Gradual improvement over last 2 days, though still troubled by both diarrhoea and abdominal pain. Bloods this am - entering neutropoenic trough. Saw consultant who wants another workup prior to transplant so will proceed to harvest next week, then more tests the following week, including gastro-intestinal examination and also scan to determine whether to proceed to transplant or undergo a 4th cycle of ICE - much to Ross's dismay! One day at a time. OK for bug and virus-free visitors/callers now but please phone first.

Feeling dreadful. Had to get up and go to hospital for bloods and then to Blood Service for vein assessment prior to stem cell harvest - then back home to bed. Unfortunately the veins in his forearms are compromised from all the chemotherapy so Ross will need a central line to be inserted for the harvest, which is likely to occur over two or three days - planned for Wednesday 19/Thursday 20 July depending on lymphocyte count. Still feeling very ill and not up to visitors.

Started to feel seedy Sat but had a lovely day with visiting whanau from
Fordell, (around 30 mins out of Wanganui), joined by Auckland whanau in the morning, then in the afternoon music with friends (see pics). However deteriorated during night and vomited early this am. Now feeling pretty ghastly and likely to remain so for next few days.




Back Row Theresa, Hugh, Neice Sarah, Olivia, Ben
Front Row Ross, Nephew Stephen, Becky, Jamie, Jimmy



Sarah Mardle (Ross's business partner Ken Mardle's daughter - Sarah is visiting from university in Sydney where she is majoring in "voice"), Ross on guitar, and Dave Harrop on violin.

3rd day of ICE chemo - went reasonably well - and Ross is pretty whammed - has taken to his bed. Plans still the same. Was wonderful to have a visit at the hospital from neice Sarah, Hugh, Ben, Jimmy & Becky visiting from their farm out from Wanganui.

Very full day. Appt 830am with registrar, then consultant, then proceeded to chemotherapy and didn't finish till 540pm. During this time visited by transplant coordinator who provided comprehensive education and lots of reading material. More chemo Thursday and Friday then Monday commence twice daily injections of G-CSF prior to stem cell harvest in around 10-14 days. Visit blood collection unit next Monday. Will also have a tour of the transplant unit which will be "home" for a few weeks from the week prior to transplant, when he is bombarded with chemo every day, until a few weeks after chemo - length of stay determined by his response and need for transfusions etc. Own room, en suite, kitchenette, TV, video, etc. but sterile of course. Meanwhile bloods every 2nd day, then every day to decide on optimum harvest time. Will take 12 litres of blood, harvest the cells and pump the rest back in! (It's called the "washing machine"). May obtain sufficient in one go or may need two or three goes (over 2 or 3 days). From now on it's very full on. The actual date of transplant is dependent to a large extent on when a bed is available in the transplant unit but he is now booked into the system.

Back from the bay after two glorious days. Blood test today shows my haemoglobin down a bit so I'll probably get a couple of units during chemo.

Sent Dee's photo of the fog off to TVNZ to use during the weather but they must have decided against it.

Every now and again, Whangaroa harbour (just south of Taupo Bay) develops a thick fog overnight. As the sun rises it heats the air and the expanding fog spills over the hills into the bay.

(We only captured this because I got up early to see the space shuttle launch that didn't happen).

Steve Palmer hasn't seen the CT report but has discussed the CT with the radiologist. He says that the indications are that the disease has been reduced a moderate amount by the chemo. The spleen is a bit smaller also. Once again, the presence of scarring can mask the apparent reduction in size of the tumours. Whatever, he feels that given that there is an improvement, and that my LDH is OK, and my liver chemistry OK, we should proceed with ICE #3, probably next Wed assuming my bloods are OK.

There is a small possibility they will hit me with a 4th ICE, but if not, I'll be in the queue for a bed in the transplant unit after they harvest my stem cells on the back of ICE3.

We have had tacit approval to escape Auckland so we might just head North this afternoon.



Sweatlog: none on day16, minisweat day17

CT scan today. Blood test also - all bloods normal and feeling pretty good. Took the opportunity to visit several of the people we have befriended in the 6 months I've been having treatment. It's a fact of life that when chemo is involved, you expect to spend some of your time in Ward 62, and there were 4 we knew in there today, all with various complications from chemo, mostly infections.

Went to Katherine's play (Shakespeare's "As you like it") at Titirangi tonight. The play is a bit silly in parts but she was good, but I would say that wouldn't I.

No sweats last night. Go figure.

More sweats last night. Josy and Geoff dropped in a big pot of stew tonight. Trying to follow the dietician's advice (6 small meals a day, don't overdo anything, bananas and mashed potatoes are good, stay off coffee, red wine and spicy food) and it seems to be having an effect. She also gave me a supply of stuff called Resource+ which is a complete food source in a drink. Tastes pretty awful, but not as bad as the contrast I have to drink in preparation for the CT tomorrow.

I can't help thinking it would taste a lot better if they didn't write "Barium Sulphate" on it in big letters.



This is our dear friend Dael. She was diagnosed with lung cancer around the same time as me and things were pretty grim, but they are giving her chemo and she has responded remarkably.

2 units of blood today. Sweats again last night but my LDH (Lactate dehydrogenase - usually an indicator of active disease) is normal so no idea what's going on. Friday will tell when we review the scan.

Damn sweats back again last night. May mean there is disappointing news to come when I have the scan on Wed. Had another blood test at W62 today but on the basis of it they said to wait until tomorrow as originally planned for my transfusion.

Today we went to the "lymphoma lunch". The Leukaemia and Blood Foundation also provides support for Lymphoma and I suggested a few months back that they might like to organise a get-together for us lymphoma sufferers and it was today. Around 20 lymphomaniacs and their partners were there. Quite good to talk to others - made us realise how different everyone's disease is.

Also had a phone call from Ward 62 - they had seen the results of a blood test I had this morning and were keen for me to go in today instead of tomorrow for my transfusion. Hemoglobin is 80 - very low. My neutrophils have also taken a dive - from 1.0 to 0.29 in a couple of days so that are concerned about my susceptibility to infection. I'll go in tomorrow for another blood test.

Steve and Margot cooked and brought round a beef lasagne meal for us tonight. I've regained a couple of kg in the last day or two, but a lot depends on when I've had fluids.

Had bloods today and I will need to go in Monday for a couple of units of haemoglobin. Eating like a horse - or trying to - but still a struggle to put the weight back on - though my general condition at the moment is good.

Unable to sleep for some reason and the world cup game looks like a win for Italy. A better day today than yesterday. Eating steadily, keeping up with the codeine and went for another stroll. Steak and susages for dinner. On pills for potassium defficiency as that showed up on last blood test. I take 2 twice a day and they are slightly smaller than manhole covers.

Finally feeling a bit better. Stroll around the mangroves and a bite to eat out. Chemo is a bit like prison, but the cafes are better. My weight continues to be a worry. I'm hoping I can pile it on again over the next 2 weeks. Steak and mashes potatotoes tonight. My scan has been rescheduled for 1 week before the next chemo - the original appointment got a bit skewed because of me starting ICE2 late and the junior doctor's strike.

An awful couple of days and nights. Ross very ill in bed and hasn't felt like seeing any visitors. Seems a wee bit better tonight. Hope for a better day tomorrow. Hospital appointment in the morning for blood tests and to have G-CSF port changed. Will seek further advice on the diarrhoea, which seems relentless. Has lost more weight. However he is confident he can put it back on in time for Cycle 3 which should take place on 5th, 6th and 7th July.

Ross took to bed with severe nausea about 330pm yesterday afternoon, and is likely to remain there for the next 2 to 3 days. This is par for the course, and I think he has coped much better physically with ICE #2 to date than he did with ICE #1. Unfortunately he had the sweats again the night before last - that bastard disease just reminding us it's still there - and while the diarrhoea hadn't gone away completely it came back last night in full force to contribute to Ross's discomfort - but no sweats. We will up the codeine and box on.

Had a bit of a scare. One of the drugs in ICE (Ifosphamide) can cause bladder irritation and bleeding - they give a drug called Mesna to mitigate the effects. Anyway, I couldn't sleep last night (no sweats though - weird) so I got up and watched England vs Trinidad/Tobago and my pee was bright red! Had a test later at daystay and it was clear. Beetroot was the culprit. So ICE day 3 proceeded as normal. Just have to endure a few days of mild nausea now.

Taking Shurli to the airport tonight. Weather is awful but we will try to get into town to our favourite Japanese sake bar for a meal first.

Sweats returned last night with a vengance. Don't know exactly what's going on but it's likely to be the bastard disease reminding us it's still there.

Day 2 proceeded with no drama. Steve the consultant sees no reason to alter the course of the chemo despite the sweats. Slight nausea today but pretty doped up on the Zofran wonder drug so not a big problem.