Not a great day. Wiped out despite red cells yesterday. The ghastly sweats are back with a vengeance which is both depressing and very uncomfortable - five changes of PJ top during the night! Also pain in his left side and a bit of a panic that it might be lymphoma in the spleen but abdominal and pelvic ultrasound just carried out was normal. My theory is that it's deep muscle pain from using new muscles on that side as right lower leg still useless (hope I'm right). Neutrophils now able to be counted at 0.08 but Dr feels it will be at least a week before they get to .5 and Ross can leave the hospital for an outing or whatever. However visitors now OK but please phone first, and of course no bugs or viruses please.

This weekend saw the men's national barbershop convention in Auckland and it is the first time in 10 yrs that Ross hasn't competed. I attended in his stead and Ross's sister Dianne came down from Dargaville with nephew Richard to be with him yesterday, and Katherine came also (Saul still has a cold but working anyway). Ross continues to improve with his white count doubling each night - now 2.48. Tomorrow his neutrophils may be able to be measured. Today Ross had a feast of visitors. This am Dianne, Richard and his children Dean and Quinn. This was followed by a very special "concert". The wonderful Checkpoint quartet from Christchurch (bronze medallists) came up and sang to him, closely followed by Musical Island Boys - current international world collegiate champions! (ferried up by Richard Lewis). Also present were Duane and Kim and Roger - quite a crowd. The music was glorious and it was incredibly emotionally charged. Ross's were probably the only dry eyes in the room. Kim took photos and hopefully will email these so we can post a couple on the blog. I had to race Checkpoint back to the hotel and then to the airport during which time James and Gloria Middleditch arrived from the convention. By the time I returned Ross was beat but very happy, with nephew Andrew and Tanya visiting. Has had haemoglobin today and IV antibiotics continue. The doctor said today that there is no doubt now that his stem cell transplant has taken well. No doubt the plan for the next week or so will develop tomorrow after the ward round.



We can't thank Checkpoint and MIB enough for their generosity in coming up and singing. This has been a very special day. Sad to farewell Roger - thanks for all your support our friend!

Ross has made significant progress. Nausea and abdominal pain now almost gone completely. Appetite returning. Able to walk a short distance slowly with crutches. White count has crept up to 0.6. While this sounds almost infinitesimal it's actually great news as it means the re-introduced stem cells are doing their thing. Once the count reaches .7 the neutrophils can be measured, and neutrophils need to get to .5 before he can leave the hospital even for a walk or a drive. Platelets and haemoglobin down a bit so he will receive further transfusions tomorrow (whoops - today. Its 1245am!) Temperature seems to have returned to normal since antibiotics changed.

Post-chemo symptoms much improved. However other complications have arisen, the significance of which will not be known until bloods return to normal, hopefully in a couple of weeks. Meanwhile close whanau visiting only, and of course absolutely no bugs or viruses please as white count is still slammed. Many thanks for all the support. Our good friend Roger, from northern WA state, USA, who has been a regular contributor to this blog, arrived yesterday and has already spent several hours with Ross - great to see him.

Definitely better insofar as the nausea & vomiting are concerned. Also although the abdominal pain persists it is a little less severe. However a new worry: Ross has developed a significant weakness of his right foot. Full neurological examination today seemed to indicate some sort of L5/S1 spinal nerve pathology - urgent MRI scan scheduled for tomorrow. No use speculating but of course we're worried. Has had transusion of platelets today and having a couple of bags of red blood cells also.
630pm: Dr checking to ensure no upper neurological pathology - Ross having brain scan shortly.

Another awful night and now so weak can barely make it to the loo unaided. Unable to shower. Temp spiking to over 38.0 now. Just have to hang in there.
1330: Now on morphine for the pain which helps somewhat. Temp stable between 37 and about 37.7C.
4pm: Assisted him to shower (on a chair) - 1st in 3 days - but completely exhausted him.
630pm: Temp 38.2 so the protocols came immediately into effect - blood cultures and IV antibiotics instituted.
915pm: Pain in stomach probably the worst thing now, especially when he moves, but he couldn't cope with noise or light so I have darkened his room completely and come home. Hope he has a better night than the last 2.
We both want to stress how wonderful the nursing staff are -all of them!

Ross had what he described as the worst night of his life last night and even worse today with severe abdominal pain and vomiting. However once some stronger pain relief and additional anti-emetic were initiated there was improvement to the point where at 330 this afternoon he had a few sips of a cup of tea. Hasn't eaten in a couple of days and will be losing weight hand over fist but we knew about the possibility of all of this. Just hopeful it doesn't last too long. (Have just nipped home to meet Katherine & Joss for an hour or so as Joss is putting up a shelf for the microwave and then I am going back in).

1115pm
Unfortunately he's awful again. Struggling just to sip water. And the medical and nursing staff are sure his temperature will get higher - "it's just a matter of time". Right now what's going on is all he can contend with. Requested more pain relief and anti-nausea medication, and that his IV be stopped overnight so hopefully he can get some sleep until 6am when he will have recordings done, meds, and IV reinstated.

Bad day but probably not unexpected. Medical staff were pleased I took him back in last night. Temperature has remained marginally under 80 C (any higher IV antibiotics) and the nausea has been so bad he hasn't been able to eat at all and has rampant diarrhoea so he became quite dehydrated, and blood pressure dropped. This evening he was given IV fluids which brought up his blood pressure, and this will continue overnight. He feels so bad he has requested NO VISITORS OR PHONE CALLS PLEASE UNTIL FURTHER NOTICE. (By all means call me on my cellphone 0274438899).
He says it's the worst nausea yet. He can't cope with light or noise. His haemoglobin has come back up after yesterday's transfusion but his neutrophils are dropping fast so he will probably be neutropoenic by tomorrow. However this may not last more than two or three days. And if his temperature gets no higher we will be relieved.

Ross still doing really well but now describes himself as having hit the wall. Anaemic today and given blood. Allowed home to sleep tonight and was asleep on the couch within seconds of arriving home - moved into a nice big clean crisp comfortable bed and is out like a light, though asked to be woken for the news at 6pm. Back to hospital 9am tomorrow - same bed etc.
1030pm
Ross was feeling progressively awful from 6pm with fluctuating low grade temperature. After discussion with BMTU, I took him back into hospital at 845pm. Not sure whether there is something brewing (ie an infection) or whether it's just a reaction to the cells yesterday, or to all the chemo, but everyone is happier for him to be in hospital. Right now he's feeling ghastly.

All done having fun. Took most of the day, and quite an emotional one, considering the hoops we had to jump through to get this far. The cells arrived in a liquid Nitrogen-cooled cylinder and they then take out the bags and thaw them one at a time (there were 7) in a warm bath.

On the left is Belinda. On the right (hopefully) is my immune system. The thing behind that looks like a photocopier is the bath.



Although the bags are separate Debbie apparently had some difficulty getting them apart (Dee took most of these pictures - I lazed about all day as usual)


Frozen - looks a bit like frozen salmon...


...and thawed (the actual colour is not as rich as appears here - the plastic is coloured to protect the contents from light damage).


Karen and Debbie (transplant coordinators) and Belinda. The cells are injected directly into the PICC line as they like to minimize the time the cells spend outside the body.


Josy and Jan were in town to see "Menopause - the Musical".


Amazingly, I felt pretty good all day, just a tad nauseous now (11 pm). One of the side effects is from the DMSO preservative/anti-freeze they mix with the cells. It makes me produce a distinctive smell that has been variously been described as everything from sweet corn to things not so nice. It permeated the entire unit. The only person who couldn't smell it was me.

I've just finished 36 hours of intravenous fluids. I filled around five 2 litre jugs and have to record everything I drink.

My work environment for the last few days (apologies to the Bycroft boy - will only be of relevance to NZers over 50).

...actually "Day Zero" - they start you at day "minus 7" - 7 days before transplant.

I've spent the last 24 hours on fluids so didn't sleep much last night. Learned an interesting fact about chemo - all the damage to the cells is done pretty much right away, which is why the want you to drink lots of fluids - it's to get the chemo out of your body ASAP to minimize the damage it does to the rest of your body. Yesterday I had to suck an ice-block all the time I was having one of the drugs, as this constricts the blood vessels in the mouth and reduces the amount of damage done to the lining. I don't want to see any more lemonade ice-blocks for a while.

All looking pretty good - not retaining fluid, minimal nausea. Cells here around midday.

Spent the day from 11am to 1030pm with Ross today. Thanks so much to those who visited and called over the last 3 days. Ross is doing amazingly well. Had his last chemo today (hopefully for ever!!!!) but has to have 18 hours of IV saline to follow as this particular chemo drug (The "M" of the BEAM - melphalan) is so toxic especially for the kidneys. But he's tolerating it really well with minimal nausea and gut pain, though we have been warned gut pain and increased diarrhoea is likely to follow. Sweats started again minimally today. He will no doubt be awake peeing most of the night through until 1130am tomorrow when the first bag of stem cells goes in. We have been told that he is more than likely to (not he might) get some sort of infection when he is neutropoenic which will require readmission and IV antibiotics. He will also require top-ups of platelets and haemoglobin for a while. (He is not yet neutropoenic and not likely to be until the weekend, but may be allowed home for day leave or overnight leave before then all going well). His land-line number again - 307 4949 ext 24041#.

Ross is doing really well. No change. Bloods still normal - ie chemo hasn't yet killed off bone marrow cell production. And I got it wrong - he does have more chemo tomorrow (Tuesday). Stem cells are reintroduced on Wednesday. My virus persists so still unable to see him in the flesh. Really hard.

Progressing well though some pretty nasty nausea and gut pain intermittently. I still can't visit because of my virus! Don't want to take any chances. Twice daily chemo tomorrow, then one more day with another drug we haven't had yet, and then that's it with the chemo! Hurrah!

All going according to plan though Ross is feeling very nauseous and flat now. Unfortunately I have a throat virus and have been unable to visit today, Katherine has a mild cold, and Saul headed straight up to Mahurangi from work to visit with Jo's brother over from the States, so he's pretty lonely. Thank goodness he has a phone as I've been able to talk to him. I doubt I'll be able to visit tomorrow either - need at least one clear day before going up. Sarah Mardle (the young woman who sang while Dave played the violin & Ross the guitar in the photo previously) and 3 of her friends who are over from Sydney for a concert series went up this afternoon and sang for him - what a treat! And tonight Steve visited. About to have his second lot of chemo for the day right now.

All went well today. Chemo this morning, then we both left hospital and took in a lunchtime movie, then home - relaxed and had dinner, but by this time Ross was decidedly seedy with both gut pain and nausea. Went back in at 9pm for his 2nd lot of chemo after which he couldn't face the thought of the trip home as was feeling worse so he has stayed in hospital. He can be contacted in his hospital room on landline direct by phoning 3074949 extension 24041 #. He may take a while to answer if he's hooked up to his IV or in the loo.

His potassium turned out to be normal but echocardiogram showed some chemo-related damage and not sure about the abnormal ECG but we are not worrying about that at this stage. We know that the chemo causes heart damage. One bridge at a time.

So far so good. ECG as soon as I arrived, then a blood test (because the ECG showed somethng to suggest my Potassium levels might be a bit down) then my Chemo this am, then chest xray, now home for the night. Tomorrow chemo am, can go out for a few hours, then chemo pm and providing I feel OK, which I'm sure I will, can go home tomorrow night too. May even do a midday movie tomorrow!

The last few days have been a bit of a blur. Our wonderful friend, Dael, (see photo previously in blog) with whom I went to kindergarten and through secondary school, died on Friday night. She gave Ross so much support during the year, while herself battling lung cancer. She has been a huge part of my life and of Ross's too since we married.

Today Ross was admitted to the BMT Unit, Ward 62. He was scheduled to go down to xray procedure at 830am but things there were chaotic. At 1145 he finally went in and had his PICC line inserted (peripheral intravenous cardiac catheter). We had asked the ward if he could be released to go to Dael's funeral, rushed home and changed, were joined by friends Di & Dave and Katherine (who now looks quite pregnant), and went to the funeral, at the end of which Ross played guitar and Dave violin and they sang "Yesterday". Another wonderful funeral - Her siblings and children gave such moving eulogies! Then a gathering at the house afterwards. What a wonderful tribute to Dael, and there were 12 women present who were her friends in the same class at secondary school who have remained friends since! After all that understandably Ross was wiped out, went to sleep on the couch, and I have just put him to bed.

Tomorrow he goes back to the Unit for his first dose of BEAM chemotherapy but hopefully can come home again tomorrow night. From Friday on he will have high dose chemo twice daily for a further four days and the next day his stem cells will be re-introduced (all going well). Makes it sound easy doesn't it?

By the way - yes, he can have visitors with no bugs. No, visitors don't have to strip and gown up - just go through the double doors, remove outer clothing (coats or jackets, hats etc) and wash hands and dry them thoroughly after first door before proceeding through 2nd door. And yes, he can have cards or letters but no flowers or plants or food thanks. And DVDs to watch would be welcome (please put your name on case so they can be returned. Yes last time he went in they had a video player and no DVD player but now he's in exactly the same room but the video player has gone and there is a new DVD player in its place.) He has a phone in his room and I'll check the extension tomorrow and put it on the blog.

Saw Steve Palmer, my consultant, this am, then lung function tests at Green Lane Hospital, then echocardiogram Green Lane. Results of everything, including bloods, endoscopy/colonoscopy and the video camera capsule study of small intestine, normal. So it's all go for stem cell transplant. I'll be admitted to BMT Unit, Wd 62, Auckland Hospital, on Wednesday 6th September, undergo 5 days of BEAM chemotherapy, and 6th day have stem cells re-introduced. (Steve informed us that if I didn't have the stem cells re-introduced there would be a 90% chance of mortality!) While there can be some pretty torrid side effects, and we have repeatedly been told that it is never entirely straightforward, I am confident my recovery will be better than most. Evidently gastric side effects are to be expected, to the extent that weight loss may mean I have to have a naso-gastric tube inserted for feeding. Also mouth and throat ulcers (though I have been lucky to date). So hope to make the most of the next few days of normality.

Flew to Wellington Tues evening for Petra's funeral which was held today. The service was emotionally charged and entirely wonderful. Caught up with Petra and John's family and friends from UK and around New Zealand. John and his children were amazing - Petra would be so immensely proud (she was anyway).
Had dinner with Marsha and Hunter Donaldson Tues pm - childhood friend of Dee's. Yesterday we drove through the Wairarapa with our hostess Ruth Giles, calling in at a couple of wineries in Martinborough and going through to Lake Ferry and Cape Palliser. It was a glorious day. Dee even pulled in a man's line at Lake Ferry - caught a stingray! (though others were catching lots of red cod).
I am feeling entirely normal and haven't had a sweat for a week and diarrhoea has significantly improved. But a bit nervous about tomorrow.