Ross home 330pm Thursday 18th May. Had a couple of bags of blood. Great for him to have a visit from Dianne and Dwight in hospital today. Still feeling pretty dreadful but mostly nausea which is post-chemo. His temperature is a bit better, which is the main concern. He will go back to Haematology Day Stay tomorrow morning to see the consultant and have his first GTSF shot and then we'll take over that. The next week will be crucial. If his temperature returns to normal in the next few days and stays down then the omens are pretty good.

Unfortunately things not so good. Ross had a bad night and developed a temperature - shivers and then sweats - and naturally became very scared. He had more blood cultures and chest xray early this morning but nothing found so is likely to be linked to the disease progression. Panadol does mask the temperature but it still persists. Also feeling very unwell - totally exhausted and nauseous and depressed. 3rd dose of chemo administered from around 1pm. He slept on and off most of the day - feeling terrible in between sleeps. Was to come home tonight but blood pressure remained low and blood count low so they decided to keep him in and give him blood overnight (not too unusual with ICE therapy). However despite three attempts two nurses couldn't find a good enough vein as he is quite dehydrated, and he had just had enought by that stage, so they have left it till morning in the hope that he'll drink lots in the night and rehydrate. The plan is still for him to come home once he's transfused tomorrow, then go back to Day Stay on Friday morning to see the consultant and get his injections which I will administer from Days 5 to 12 (I think) of each ICE cycle.

Ross is doing well. Unfortunately the 2nd dose of chemo isn't meant to be administered until 24 hrs after the previous one, which meant not till this evening. So we thought Ross could come home for the day but it wasn't till nearly lunchtime that we got the all clear. However came home for a few hours during which time Ross did some work for ADR and some on his chorus's website - so pretty good! He hasn't been too nauseous (Zofran is a magical drug) and has had no untoward side effects to date. 3rd dose will be administered tomorrow overnight and he may come home tomorrow during the day in which case a stroll along the waterfront in the sun might be in order! The weather forecast is good.

Cycle #1 of Ross's ICE chemo commenced at 630pm tonight. A somewhat frustrating day - appt at hospital at 10am. Took 4 hrs to get blood results and the chemo didn't arrive in the ward until after 5pm. This means Ross will be hooked up to it until at least 230am tomorrow, so obviously he stayed in hospital. If he doesn't have adverse effects, and if the chemo arrives at a reasonable time tomorrow, he may be able to come home tomorrow night and go back in for dose 3 on Wednesday.
He has been on prednisone for the last 3 days which has controlled his temperature, so he has been much more comfortable. This will be discontinued today in the hope that the ICE chemo will take over.
Each ICE chemo treatment is delivered over three days. The time between treatment cycles varies from 3 to 4 weeks, and the number of cycles necessary could be from two to four, at the end of which we hope he will undergo autologous stem cell transplant (ie from his own bone marrow.) Of course he must be in remission before transplant can proceed and if he doesn't respond to this chemo they won't proceed to transplant. So one day at a time.

It's Saturday lunchtime. Ross had temp spikes in the night - the usual sweats and shivers - but enjoyed being in our own bed. However we have done some internet research and I am completely shattered as I had no idea how horrendous stem cell transplants are. I can't bear the thought of Ross going through all that. The following is a link to a site which gives all the information. [His will be an autologous transplant]. The "transplants for dummies" section is terrifying.

http://www.nhlcyberfamily.org/treatments/sct.htm

A rough time. Ross had to drink 4 litres of contrast last night and another litre this morning before his colonoscopy this afternoon - revolting. He managed to get it down by mixing it with vast quantities of Roses Lime Juice with it but still a big struggle. The colonoscopy was carried out at MercyAscot Hospital - we wanted Rafiq Ali to do it as he's wonderful, and he did the first one which showed the horrible tumour in his caecum. Anyway to cut a long story short the colonoscopy today was completely normal! That was quite unexpected and cause for some hope I guess. The haematologists said there were some "rogue lymphoma cells" in the mesentery that have caused what's going on elsewhere. However we grasp at any straws. Came home and Ross took to his bed as he was full of sedative, and the kids (who of course have been pretty upset) and their partners came round for dinner and each sat on his bed for an hour or so and chatted with him. A good evening. We'll have a quiet weekend - have discouraged visitors as we just need to get our heads around what's happening here on in. However Ross's cousin Duncan turned up tonight having gone to the hospital first. Good to see him. And I'm off to bed with Ross now - wonderful - and a really early night!

A ghastly day. Initially we were advised by the team that the scan was ambivalent but a "lymph node specialist" reviewed the scan with the haematology team and they now feel there is no doubt that the lymphoma has progressed. Ross will still have colonoscopy tomorrow to check the bowel and caecum. He will come home for the weekend then Plan B swings into action, for which he will be readmitted to Wd 62 Ak Hosp Monday morning. This involves ICE chemotherapy, which is a different regimen, tougher, and may involve two or three 3-4 week cycles. While the first chemo must be done in hospital as an inpatient it is possible, depending on how he tolerates it, that subsequent chemo may be administered as a day stay patient over 3 days. Bone marrow cells in the blood will be harvested on the back of either the 2nd or 3rd cycle and stem cell transplant will be carried out. We asked the likely success stats - around 30% possibility of success. While not good odds of course we'll go for it. Probably the worst day of our lives (thusfar! hope no worse ones to come).

Ross seemed much better today. He has been logging his panadol and temperatures on to an Xcel spreadsheet and now thinks he has the timing down to a fine art (which I believe he does). Consequently his spikes aren't as high and he's seemingly much less ill. He had his scan this afternoon but results not till tomorrow. It was good that he was better today as he had a feast of visitors: my brother Barry and his wife Carolyn came up late morning and stayed right through until after he got back from his scan at 230. Saul. Rob Challinor. Dave Harrop. Harish Kumar and his partner (Temprecord). Katherine & Joss (with whom we viewed their recent trip to Samoa photos on the laptop). Zahurul Khan and his wife (Dr who worked for me at Hauora o Puketapapa). All that not counting the phone calls. So not a chance to be bored and not too much time to focus on all the possible scan outcomes.

Situation unchanged in terms of temperature spikes. However I think Ross has longer periods where he is not so ill. Consultants have decided to scan tomorrow.

Ross seemed better this am - I was there by 745 as I had a Drs appt myself at 930am in Ponsonby. He was chirpy and sat up and had breakfast - colour good and temp nearly down to normal. He had had paracetamol at 6am. I was back from appt by 11am and he was still pretty good. He spoke to brother Jim from Melbourne on phone and Berry came to visit around noon. During the visit I could tell Ross's temp was going up and within 30 mins of Berry leaving it had reached 40 degrees C and he was feeling very unwell. Dr notified and yet more blood taken for culture. More paracetamol and pain relief and he was resting and trying to sleep so I have nipped home to get in washing and do an hour's work before going back up. The good news is that the haematologist examined him early this morning and could find no evidence of enlarged lymph nodes and feels it is much more likely this is an infection of some sort! More later. Dee
1130pm
Ross was better this afternoon - ate dinner and got up for 1st time in 3 days to watch the news, when cousin Duncan arrived. However after half an hour began shivering as temp rising again and went back to bed. Averted the real temp crisis by taking the paracetamol earlier and was starting to sweat (which occurs when temp coming back down) just before I left. Hopefully he will have a better night. Still no clues as to cause.

Ross had a bad night last night with temp spiking to 40 degrees C - very shivery and fairly acute abdominal pain. It wasn't till around 6am that he got some morphine-like medication and panadol which settled him somewhat, and by 9am his temp was down to under 38. However climbed again and shivers again this morning. A cool shower and fresh bed helped. Also his room-mate - a Cook Is youth with Downs Syndrome who was quite disabled and accompanied by his mum who stayed over - has been discharged so Ross had the room to himself. (She snored loudly while he played loud music - not helpful to Ross.) I therefore settled him to sleep and have nipped home to do some quick washing/cleaning up. Doctor came round this am and said he will be there for "a few days", the main reason being that his bloods are going down (ie it is the time of his cycle where his lymphocyte count drops when he's more susceptible to infection, with the lowest count usually occurring around 2.5 weeks post-chemo) so it would be dangerous to discharge him until things have definitely settled. No plan to scan at the moment as they want the re-staging scan to be done at exactly the same time of his chemo cycle as previously - therefore it will be done on Monday 15th. If there is any ambiguity he may travel to Melbourne for a PET scan courtesy of ADHB. However first things first - let's get this crisis behind us. One possible scenario with these symptoms is recurrence of tumour. But the doc says this is the least likely, though he can't rule it out. And unfortunately it's human nature for the patient to focus on the worst possibility, despite reassurance to the contrary. Am shooting back up to the hospital now. More later. Dee
1120pm
An awful afternoon and evening I'm afraid. Temperature remained high and Ross was in quite a lot of pain, both headache and abdominal. Apart from feeling so ill, he also was feeling very down. Because of his sustained high temperature he was dehydrated and it was quite late before further saline was administered, and some more of his magic pain relief. He slept from around 830 to 1030pm but was awake when I left. He did seem more comfortable though. I must take my hat off to the nursing staff. They are great!

Ross had a bad night. By 5am he was feeling freezing though I could tell he was burning up. Temperature high and he was dehydrated despite drinking plenty of water. Phoned hospital who said to take him in. He was very unwell for a few hours and then the saline drip and the paracetamol kicked in and his temperature started coming down. Now back to normal. He is exhausted and sleeping most of the time at the moment. I have just come home for a few things for him and am heading back up. Investigations are thusfar all normal so no explanation. If things remain OK he will come home tomorrow. He's in Ward 62 Auckland Hospital and has his cellphone with him - 0064 021879647.

930pm:
Just back from hospital. Unfortunately Ross's temperature has again spiked and he is feeling pretty awful. The feeling is that whatever is going on was masked by the paracetamol which reduced his fever but not the infection or virus causing it. Placed on IV antibiotics. More blood cultures. Still none the wiser as to cause but he is unlikely to be home tomorrow. Probably needs to be afebrile (sorry, normal temperature) for 24 hrs before coming home.
Dee

I've been looking back at my private journal (which has much more gory detail than you guys get to see) and comparing this cycle with the last. They are remarkably similar and predictable. Having my chemo on a Friday means that the nadir days (8, 9, 10) cover a weekend so I get to go to work most days. Drinking lots of water (or more correctly, peeing lots of pee), regular exercise help a lot also.

I have a CT scan booked for Monday 15th, and a colonoscopy (whoopee!) probably the day or two after. On the basis of those I'll find out Friday 19th May whether I'm in for 2 more chemo hits. If the CT is inconclusive, there is a small chance I'll need to travel to Australia for a PET scan, which is much more effective at determining the presence of live tumour, as opposed to scarring.

Ross not so good today. Has been at work all week, though last night wasn't so good. Today he gave in and came home early. Now sleeping. Probably not in for a good weekend. This despite an even gentler tailing off of the prednisone. But overall doing pretty well. History tells us that he'll be over this in 3 - 4 days and will have forgotten how bad he felt. Here's hoping.

Had the chemo today. We won't know whether this is the last one or whether I have 2 more until my next CT scan - probably on the week of May 15. This was a bit tougher than previously - more nausea and feeling a bit ratshit - but still tolerable.

The last week leading up to now has been fine. No problems to speak of, keeping my excercise up and maintaining weight.

Ross has bounced back and went to work yesterday and today -amazingly resilient. Still has some residual abdominal pain but very much better. On to next cycle now - Friday 28.4.06.

Not a good Easter for Ross. Wasn't great on good Friday, though dug some holes with spade & post-hole borer with Jim's help on neighbour's bank where we are planting around 40 rosemary plants. On Saturday he was just awful, in bed most of day. He hasn't been great since, though short bursts where he's not too bad and gradually improving. I'm looking forward to this being all over! Farewelled Jim and Deb at airport yesterday am, and met Katherine and Joss on their return from 2/52 in Samoa where they holidayed with Joss's parents from UK who were en route to Perth to welcome their 3rd grandchild. Called in to Avondale market on the way home - wonderful fresh and cheap fruit and veg - but Ross faded quickly so back home to rest. Similar story today - started out well but faded, though definitely a bit better each day. Tomorrow he'll be much better I'm sure. We think it's the post-prednisone crash but it's really tough!

Saw the resident Haematologist today before my chemo and discussed the CT scan I had last Monday. My scan results are encouraging, but not as good as they could be. The good news is that all the large tumours have shrunk, as have all the other affected lymph nodes, and there are no new areas of disease.

However, it is still present after 4 cycles, which is not the best result. What they don’t know is whether what they can see is residual tumours or scarring from tumours that were there but are now gone. They will scan me again after another two cycles, which will give them a better idea. I gather anything that shrinks further in that time is still-present tumour, and anything that doesn’t is likely just scarring. I'm probably going to have 4 more cycles.

Whatever, I'm ready for another 6 (or 12) weeks of toxic recreation. My last cycle was the best yet in terms of good days vs bad, so I'm hoping I'll be OK.

Arrived home from the chemo to the news that Theresa (D's niece-in-law) would be dropping in a meal for us. Just finished roast chicken and veg, and a delicious muffin/carrot cake thingy and we're watching the Super 14 with Jim and Deb, here at the moment.

These photos were sent to me by a barbershop friend. They are too cool not to share. The guy is apparently reknowned for these 3-D chalk drawings. There are several more <a href="http://public.fotki.com/rossmcm/ross/cool_stuff/"> here.</a>

I'm pretty good at present. My bad days only numbered 3 this time, and coincided with the weekend , so I was able to spend all last week at work and probably most of this week.

Monday I have restaging CT scans.

This is Dee. Ross had a great week - at work the whole week. The good days were possibly extended by a two-day tailing off of the prednisone this cycle. Today he tried to do things - started by pulling out the tomatoes and potting up the lettuces. However he is very miserable - so much so he is now in bed feeling awful.
PS Last of the kittens went to a new home last night - we feel very sorry for Leia who is moping around looking for them and going back to where she fed them. However all have lovely homes. Leia's for the chop on Monday.