Woke this morning to devastating news. Our dearest friend Petra died suddenly yesterday. Petra, John and their family have been a significant part of our lives in latter years and Petra has provided me with unstinting love and support while going through my battle with lymphoma, having beaten the odds herself against breast cancer. The world will be a much poorer place without her. Our hearts go out to John, Helen, Liz and Michael, and the extended family.

Colonoscopy/Gastroscopy no problem. Don't remember it, which is how I like it. Rafiq found nothing to worry about, as he predicted he would at the outset today. He does however want me to have a video capsule exam (where I swallow a little camera and it takes photos as it moves through me) so they can be double sure and check out the small bowel. So I will. Monday. Means more fasting and another couple of litres of lemon-flavoured seawater on Sunday. Tomorrow I eat what I like. So I will.

Saw several people today in preparation for the transplant - social worker, pharmacist, dietician, transplant coordinators. One day's worth of my 3 days of harvested stem cells is suspect but they reckon they have enough from the other two days to do the job.

A lot hangs on my colonoscopy tomorrow. I'm currently working my way through 3 litres of the awful stuff they give you to cleanse your insides. One glass every 15 minutes. It's amazing how short 15 minutes can seem.

Saw the consultant today and he is still reasonably happy with my progress - my LDH is normal, the last CT showed slight reductions in disease and no new disease, but as he said "Don't break out the champagne".

I'm pencilled in for the transplant unit on Sept 6, provided everything behaves from now until then, and my colonoscopy (in a week) doesn't show up anything sinister.

Saul dropped by in this $200,000 Merc convertible. It belongs to a customer of his who can't drive it because of a medical condition but she wants Saul to blow the cobwebs out of it occasionally.



Had 2 units of blood today and because Ward 62 was full, it had to be given to me in the Transplant Unit, so we got a sneak preview of what that will like. Here's hoping we get that far.

Today we had planned to go to my chorus's concert in the afternoon and a bash for Phil Skaggs (ex Director of City of Sails Chorus) tonight. We have been looking forward to both. However Ross had blood tests this am which dictated this was not to be (see above). I am not surprised as Ross is absolutely whacked - currently out for the count on the sofa. He will be going in to Ward 62 tomorrow (Sun) 9am for a couple of pints of haemoglobin, hopefully only for five hours or so, and I will need to continue the dreaded G-CSF injections until the neutrophil count comes back up. Unfortunately both sweats and diarrhoea continue.

Blood test yesterday - didn't hear back so I assume nothing needs topping up yet, though I expect I'll need a transfusion of something before too long. The diarrhea (you needed to know this) is definitely chemo-related so I'm less worried about that than they are. The sweats still plague me however, and we're all worried about those.

Emerging from the chemofog today. A day spent doing what I enjoy most - just messing about with D. Feeling a bit better so we went out for lunch with K. She works down at the viaduct basin and we happened upon "Ulysses" out of the water having some work done on it. A truly impressive vessel - owned my Graeme Hart, 58m long and worth $100m. Didn't have the camera but will try to get some pics later in the week.

Went for a long walk on Takapuna beach. Always interesting because the north end of the beach is formed by large lava flows. This photo (taken a couple of years back) shows where the lava has solidified around a tree (probably a young Kauri). There are several examples within an easy walk.




At the north end of Takapuna beach there is a plaque I had never noticed before. It reads:

"This plaque has been erected by the Takapuna Rotary Club as a service to the people who enjoy walking and running on Takapuna beach.

The distance from this plaque to a similar one at the other end of the beach is 1208 metres."

There you go.

ICE # 4 was administered Tues/Wed/Thurs relatively uneventfully. In fact on Tues evening we went out to dinner with Katherine & Joss to a little French restaurant in Kingsland, despite Ross feeling seedy. However it was distracting for him and enjoyable, (and we could feel the baby kick!) Tonight, after his 3rd hit of chemo, Ross is starting to feel pretty poorly and will be feeling ghastly for next 4 - 5 days. However now he just has to get through the next four to five weeks without the bastard disease making itself evident again. It's a bit like walking on eggs as he is still having intermittent sweats, his LDH has crept up a bit, and the diarrhoea persists. But liver function tests and ESR remain normal and the scan doesn't show disease progression. If it can just stay like this we'll be on target. Also his bloods have to come "up" - ie Hb and white count - and we are back on the dreaded G-CSF, which gives him such nasty bone pain, from Saturday to boost his white count. He also must have fairly extensive endoscopy studies of his gut once his bloods come up to ensure there is no disease causing the diarrhoea. So all these things need to be OK before transplant can proceed. Fingers crossed.

to Rotorua on Friday night. Only our second weekend out of Auckland this year. Note the frost on the racecourse next to Rydges Hotel:


En route:


then to Taupo to watch NZ vs Australia with Timmy (Dees sister) and Hamilton.

This has got to be one of the more scenic places you can have lunch (the completely refurbished De Bretts hotel on the Taupo-Napier highway):


Suzie and Marcus with their very talented and possibly slightly deranged dog Ted:

The last few days have been a bit up and down. Saw Steve Palmer who ordered an urgent CT to try to determine what was going on given I'm still getting the sweats. Had the CT yesterday and a phone call from Nikki the charge nurse at Haemo just a couple of hours later to say that Steve had looked at the CT with the radiologist and there is no apparent progression of the disease evident - i.e. the CT looks pretty much the same as the previous one.

This still leaves them wondering what is going on, but on that basis he has scheduled me for a 4th cycle of ICE.

Also had the final results from my harvest. They got more cells on the last day that they were expecting so my total count is 2.97 (they normally require 3.0). The are growinig some cells now to check how well they grow. If that proves OK I won't need any more harvesting and if I get a good resoponse from ICE 4 and nothing takes off in the 2 weeks or so after that I should be into the transplant in 5-6 weeks.

...in that I went to work and am feeling pretty good, apart from the regular sweats that still plague me. We shall see what the consultant has to say tomorrow. Another big adventure.

Had dinner with Sally and Rob at Scalinis in St Heliers. I've been having some pretty dark thoughts lately and it was a welcome distraction. I also highly recommended it - great food.

A long, tough day in Wd 62 at Auckland Hospital. Didn't assess CD34 today as knew it would be dropping, but platelets and haemoglobin low. So back on to the "washing machine" for around 4 hours from noon. Then Katherine and Joss came up with the laptop and the DVD of the new Ricky Gervais show "The Extras" which was distracting for an hour or so of Ross's first bag of whole blood. (Katherine's pregnancy is now becoming apparent!) Then he had a bag of platelets, then a further unit of whole blood. Unfortunately his temperature went up in the middle of all this so last bag had to be administered slowly. Then the central line was removed and he had to wait another 30 mins to make sure he didn't bleed to death, so didn't get away till 1030pm. The awful thing is we don't believe there have been sufficient cells harvested after all this for transplant so not sure what now, but one possibility is bone marrow harvest via biopsy. However doesn't do to speculate - wait till we see Steve on Wednesday. But some rays of sunshine: two days where we can sleep in! And no more twice daily injections of G-CSF.

...which was at Ward 62. They did 10 litres, took around 3 hours, but they still don't have enough stem cells, so I'll be back in tomorrow for another 10 litres followed by a couple of units of Haemoglobin. After that hopefully I'll be able to get rid of this central line in my neck. Seeing Steve Palmer on Wednesday when the next phase pf my treatment will be decided.

This is Vivien at the NZ blood service. She sat by the machine pretty much the whole time. The machine takes 3 litres of my blood each hour, extracts the stem cells by means of a centrifuge, and puts the rest back in to me. I was on it for 6 hours, so that means my entire blood supply was processed around 5 times. They need 180 million stem cells for someone of my weight, which means I go back again tomorrow to get the rest (to ward 62 at the hospital however - the blood service is busy tomorrow - a few times a year special interest groups give blood en masse and tomorrow it's Auckland's Indian community. Good on them I reckon).

Ross had bloods 830am and hadn't been home long when he had a call to go back for insertion of a central line (or Groshong PICC line) for harvest. So back to Haematology Day Stay, one bag of platelets then the call to go to theatre. Another bag of platelets in theatre and then two anaesthetists had a bit of a struggle to insert the Groshong in the large vein on the right side of his neck - five lots of local anaesthetic and three lots of happy juice before finally they got it in under ultrasound guidance. By the time all this was over it was too late for harvest so home tonight - in quite a bit of pain and straight to bed. Harvest 830am tomorrow at the Regional Blood Service. There will probably be insufficient stem cells in one harvest so more than likely there will be a harvest Saturday as well in Ward 62 as the blood service closes over the weekend.

(R here - I'm up and about now but this line in my neck is not all that comfortable)

Here's Rebecca attending to the line just after it went in (Dr Rebecca De Souza - coordinator/anaesthetist extraordinaire!) I don't remember too much of what went on, thankfully.



Scene from our garden.

Blood test today. They called me back in for a platelets transfusion but CD34 count (5) still not high enough. Back tomorrow for the same drill.

Today's blood test showed a CD34 count as 2, and they need a count of around 10 for harvest, so it's likely to be towards the end of this week that I go in it. Once they have the harvested cells I'll likely have another shot of chemo to keep me quiet until there is a place in the transplant unit.

A good weekend, though the blood test today (Sunday) showed my neutrophils as zero, so if I catch anything at the moment I'm in some trouble. On the other hand I don't need another transfusion. I'm having daily blood tests from here on - they will monitor my white blood cells and look for stem cells with the CD34 protein attached. As soon as I am producing significant numbers of these I will be whipped off for harvest, where they collect enough of them (hopefully over 1-3 days) for a transplant.

Had a flying visit from Hazel and Des, Cousin Carolyn and her girls Michelle and Rachel. A glorious sunny Sunday afternoon.



If anyone is interested, all of the photos in this blog can be downloaded at full resolution from:

http://public.fotki.com/rossmcm/ross/chemo_journal_photos/

Went in for a blood test today and was called back for a transfusion as my haemoglobin had dropped, so spent the afternoon getting my 2 units worth.

Met Jo, one of the coordinators of the transplant unit, who filled me in a little on what will happen next week. Also spoke to Steve Palmer the haemotologist who said that he had conferred with Rafiq Ali and they think I should have a gastroscopy and colonoscopy when I come out of this trough to try to determine the reason for my continued gastro problems. Steve also reckons its looking more likely that I'll have a 4th bout of ICE as the bookings are pretty heavy in the transplant unit.

Feeling much better after the transfusion.

First time I've felt like venturing out for a few days. I was shouted lunch by Barry and Carolyn and Dee took Dael to a movie. I'm avoiding movie theatres. After getting up, showering and changing into clothes I most felt like falling back into bed - I suspect tomorrow's blood test will show my counts are dropping a bit.