Consultant was keen to press ahead with ICE#2 despite the diarrhoea thing being unresolved, because he's concerned that it we leave it any longer the disease will start to return, so I'm home after a day at daystay. Feeling a bit seedy but otherwise OK.

Auckland suffered a city-wide power-cut for most of the day and that, coupled with the fact that the consultant doesn't think I'm well enough for another shot of ICE, means that I've been delayed will Wed.

I'm not so sure about the Imovane/muscle cramps connection anymore. I still have symptoms 5-6 days after stopping Imovane, though not nearly as severe.

Saw the consultant Steve Palmer today and he has OK'd me for the second round of ICE, starting next Monday (as an outpatient Mon-Wed). I'm better again today than yesterday - almost walking normally again and the only limb pain I experience is moving after a prolonged period of inactivity. So it's almost certainly the Imovane that was stuffing me up there. Still get very tired but I think that due to my general lack of muscle tone condition and 2 weeks of diarrhea.

Another interesting point is that last night I managed to get right through without soaking my superman pj's. Had a very mild sweat about 7am but otherwise OK. Not holding my breath, but could be another encouraging sign. Steve also had the results of a closer examination of my bone marrow biopsy, which was apparently clear.

So all in all a good day after what we thought was very bad news a couple of days ago.

Ross had a brainwave last night. Tried to think of anything that had altered in the last couple of weeks and it's his sleeping tablet. Looked up on the internet and sure enough one of the more unusual and rarer side effects is muscle cramps and stiffness of the limbs (also diarrhoea and increased sweating). Ross swapped his medication last night and his limbs and walking are decidedly better today. However the other symptoms persist, but could still improve if they are drug related (Ross less optimistic than me re this possibility). He had a big sleep late morning, and then we went out today for a drive and gentle walk - initially around the new Sylvia Park, then the park at the bottom of Shore Road. Ross is still getting very tired. We'll see what Steve the consultant has to say about all this tomorrow.

Saw consultant today. He is not happy with Ross's condition - feels he is too unwell to proceed to ICE cycle #2. Ross's night sweats continue, and he has pain in his limbs - finds it hard to walk when getting up out of a chair etc. Consultant feels all this is unlikely to be due to the chemo or G-CSF. While such symptoms can be caused by the treatment it doesn't usually persist this long. Although there is still a very small chance Ross's current unwellness is related to an infection or virus this is becoming increasingly unlikely - more likely to be disease related. More bloods and a chest xray today and review Friday. Initial bone marrow biopsy negative but more slices ordered. Possibly a further scan.

Yesterday not so good. He has had diarrhoea for several days (it will be intresting to see if any bugs isolated that could have been responsible for the temperatures). Haematology gave Ross the option of being transfused, as his haemoglobin was right on the border for transfusion, or waiting until he felt he needed it. He opted to wait, and is quite a bit better in himself today. We actually went out to lunch with Steve & Margot to Cafe Extreme. Jim flew back to Melbourne this am and Dianne and Shurli have headed back up to Dargaville. While it's great to have all the whanau here it's also tiring, and it will be good to have some space for a day or two. Wednesday the day of truth - ie back to Haematology and the decision as to whether or not to proceed with next cycle of ICE chemotherapy.

Bone marrow biopsy yesterday went well. Ross slept for most of the day following it - probably the sedative, but also he is absolutely tuckered out as he averaged little more than four hours' sleep per night in hospital. Whanau last night for a dinner cooked by sister Maree who came out from Sydney - so all the siblings were together for a while in the hospital - a rare occurrence! (Robert has now gone back to Hawera). Also here for dinner last night were nephew Andrew and wife Tanya, and cousins Iole and Tony. Very special. Ross was up for breakfast this am but now back in bed and sleeping. A lot of sleep to catch up on! We suspect that if all goes well in terms of the biopsy results and bloods, immediately following the visit to the consultant next Wednesday am he will go straight into ICE cycle 2. Fingers crossed.
1056pm
Ross hasn't been good since coming home. Completely wiped out and mostly sleeping or exhausted in bed. I phoned Haematology and they want to see him at the hospital tomorrow morning - more blood tests - in case thi is due to low blood counts. He may need transfusing which might make him feel a bit better. More tomorrow night.

Ross has been making a steady improvement in himself over the last few days and his temperature spikes have been lower. Seen by Infectious Diseases physician this evening who gave Ross a thorough going over, including history and physical examination, and doesn't think it's an infection, but that it's disease related. And hopefully it will gradually subside. So home tonight at 7pm. Back to hospital 10am tomorrow for bone marrow biopsy (as an outpatient) then back to see the haematologist next week. Hopefully this all means we can move to the second cycle of the ICE chemo. Thanks so much for the wonderful messages of support. This has been a torrid journey thusfar and there's still a very long way to go!

Still in hospital. A pretty good day. Similar night last night with the fever/sweat routine. As well as the sibling whanau the McMillan cousins (Shona, Marie and Joanne) came to see Ross today, and so did Tom B and Melanie, and Berry, so a real clan.



Scan report suggested there was a slight reduction in the lymphoma. While this sounds like cause for celebration Richard (consultant) isn't bouncing off the walls - reading between the lines we think he still really feels disease progress the most likely explanation for what's going on. However he has referred Ross to the Infectious Diseases team for an opinion. Ross's white count is up today so no more G-CSF and possibly home in the next day or so to be followed in outpatients. Richard won't proceed to 2nd cycle of ICE until there are some answers. I am concerned about this as there may never be! So we remain in a holding pattern as there is still hope that when the bloods come right back up again temp will return to normal.

A similar day. Scan carried out. Richard Doocey, consultant, had a look at it and told us that unfortunately there was no sign of infection (which would have explained the fevers). The lymphoma didn't seem obviously to have increased in size but he will need to have a proper look at it with the specialist radiologists tomorrow. The waiting is pretty tough. The question is - has it reduced in size following the ICE.
Nice to have all his siblings here - (except Maree). Shurli from Vancouver, Jim from Melbourne, Dianne from Dargaville, Robert from Hawera.

Despite a good day yesterday Ross still drenched with post-temp sweats during the night. However another good day today and we think the tweaking of the panadol really helps. Ross had several visitors today. Steve this am, Katherine, Barry & Carolyn, Cousin Marie, Paul, Daniel and Joseph, and Russell McM turned up tonight - great to see them all. Ross watched the news and Dancing with the Stars tonight, and when I left (early at 1030pm) he seemed settled, though no doubt spikes and sweats were in store. While we hope he will have a scan tomorrow we have heard that the cancer radiographers are going on strike over the next week on specific days so not sure what's happening.

The drug juggling is working and Ross had a very much better day. Temp was spiking when I left at 1230pm but much more manageable during the day. Had some IV platelets today and blood count revealed some neutrophils (albeit only about .2) so he is coming out of neutropoenic trough. I think he is feeling better in himself. Saul brought in his TV and I hooked it up and moved the beds around in the ward so Ross, Bill and Jack's beds were lined up in a row to watch the replay of the Super 14 on Prime. Pity we couldn't see much except fog! Unfortunately Ben, the other roommate, had another outburst and was eventually removed by security guards - still sleeping on a chair in the procedure room when I left. Poor Ben.

A little better today as juggled medication so will wait and see what the morning holds. Gave medications closer together but will need a seven hour stint through the night without it as can't give more than so much within 24 hour period - it's an experiment! Hope it results in a better night's sleep. Senior consultant visited today. Still a little baffled by the clinical picture but leaning towards lymphoma progression. Will probably scan on Monday.

Still in Wd 62 and likely to be so for a while (hopefully until we have a turnaround). More of the same. While the day fevers are manageable, the nights are much more severe. Ross is becoming exhausted.

Ross still in hospital. Things not going well. Temperature generally higher today and spiking over 40, with tachycardia, following which he feels very unwell. And still no sign of a cause. Drs still say they can't be sure what's going on.

This relates to Tuesday - it's just that I was late home!Ross still in hospital. Jim and Shurli arrived today and it was great for Ross (and me) to see them both. We tried to get Ross home today but consultant very reluctant as his lymphocytes are troughing and he had had a peristent temp. He had a good day but tonight things turned to custard. Temp rose to 40.3 - very unwell. Drip initiated 10pm. Worrying.

Had an appt this am to change abdominal port where I inject Ross's G-CSF but his temperature has continued all weekend and worse last night, with both shivers and severe sweats, so I phoned first and sought an appt with the Dr at the same time. Initially she thought she would treat him as an outpatient with IV antibiotics but decided to admit him and administer the antibiotics and run further tests - chest xray, blood culture and virology, etc. in case there is a cause other than (or as well as) disease progression. So back in Ward 62 - hopefully for an overnight stay only. Jim and Shurli arrive tomorrow to see Ross which will be great! Of course I'm still hopeful that the ICE chemo will have an effect. If it works it should kill the fever within the next week.

Got up and dressed for the first time in a couple of days. Had a fever overnight but decided not to charge off the hospital even though we are meant to. Not feeling too bad today, better then yesterday. Nausea is down, eating OK, still pretty tired and I've lost 3 kg over the last week. My good mate John Howell just dropped by before shooting back to Melbourne. May even go out for a drive later.

Fever at night again however. Also got a bit of a sniffle.

Ross had a reasonable night with no sweats or shivers, though not so much sleep as slept much of yesterday. Today a little less nauseated. Got up for a shower, planning to get dressed, but didn't make it and straight back to bed where he has remained all day. Hasn't felt up to visitors, though spoke per phone to sister Shurli in Canada, and John H who is visiting from Melbourne. Temp has fluctuated from 36 to 37.87 (mostly above 37) while taking panadol regularly and Ross is reluctant to see what happens if we stop the panadol as (a) if the temp spikes it's very unpleasant for him and (b) he'd probably have to go back to hospital. So here's to it remaining below 37.

Ross had a good night in that he slept. (Woke at 2am for meds). No temperature spikes, though some sweats. Saw consultant this morning who said his liver function tests have improved. These two things (improved LFTs and reduction in fever) are cause for cautious optimism. He still feels lousy, barely able to lift his head from the pillow due to the effects of the chemo with utter fatigue and nausea, but I think he's a bit better than yesterday. Had his first G-CSF (granulocyte colony stimulating factor) injection this am at Haematology Day Stay, and I have come home with supplies to administer myself from here on. (G-CSF aids stem cell mobilisation which is necessary prior to harvesting for transplant).