Lumbar puncture (LP) yesterday. Both frustrating and traumatic - frustrating as lab yet again on "go-slow" strike so had to hang around for literally hours to get blood results before carrying out LP. And doctor had a very difficult time getting cerebro-spinal fluid (CSF) and eventually gave up and got another doctor. Very traumatic for Ross. Eventually CSF obtained but blood-stained through the trauma which contaminates some testing - fortunately not the toxo test. Also one whole tube contaminated because plastic from the lid dropped off into the tube so had to take more! Home and in lots of pain last night and headache today but has gone to work. 1150am - whoops - just spoken to him. He's not at all good - severe headache and vomiting. Am picking him up and putting him in bed.
11pm. Very much better after anti-nausea medication, pain killers, and a sleep.

Saw Dr Steve Palmer, Haematologist. All blood results normal which is very reassuring. From the point of view of the lymphoma Ross definitely seems to be in remission, and results to date indicate no active toxoplasmosis. However to be sure he will have a lumbar puncture on Monday. Steve thinks that "unfortunately" it is the damage from the toxoplasmosis to Ross's nerve roots that is causing the pain and no idea about prognosis. He will continue to increase the Gabapentin by one tablet per week and if necessary reduce the Amitriptyline and see how he does. The neurologist phoned yesterday - she has been in Australia - and said she was trying to save Ross some money by not going back unnecessarily! She said that steroids might cure the pain but she wouldn't prescribe them as they act as an immunosuppressant and she would discuss this with the haematologist. However Steve was very very reluctant for Ross to go on steroids for precisely that reason - might invite a recurrence of the toxoplasmosis which is a very opportunistic little beast. So it's plod on - LP Monday - back to Haematology clinic in 6 weeks. Meanwhile Ross is just about crippled with pain by evening.
Aside from all that we now have the house on the market (at last)! but haven't seen anything suitable to move to. The more we look at the more we realise how much we love our present house. The stupid thing is that we don't know Ross's prognosis. In a year he may be fine (wouldn't that be wonderful!) and we might regret having moved, but we just can't look back and currently it is very difficult here for him.

Well results of MRI to hand. In summary "stable to mild improvement" which is good news. However the pain not only persists but has been getting steadily worse. And the neurologist phoned to say she didn't want to see Ross again as he was being followed up by haematology at the hospital - what!? She hadn't even discussed the MRI results or the results of the drug trial and had no idea where he was at with the pain. Nobody wants to know.

Ross has now trebled his amitryptiline but as yet to no avail. Pain if anything worse still, and the increased amitryptiline has already produced some other unwanted side effects. However Ross will persist. Yesterday had physio and woodwork at Rehab - went well and balance has improved. Problem is that the mobility is limited by pain. Next Monday probably last session at Rehab. Yesterday also had MRI scan of brain and spinal cord - no results to hand as yet. Also appointment with GP - so pretty much a day of medical stuff. Hope to get results of scan before seeing the specialist (on 25.5.07.) as GP should have a copy and said he would phone us, but I think it will take a week at least for reporting as the neuro-radiologists need to consult with the haematologists and the neurosurgeons.

Appointment with Steve Palmer, Haematologist, on Friday was uneventful. All blood tests normal which is great. He will try and get the MRI via the hospital system but it's anybody's guess whether private or public will be soonest. Hosted Roger Mills and Pete & Linda McCreath from Mt Baker Toppers barbershop chorus Wed/Thur/Fri and they had a show on Thursday night - they were really great! Ross had a sing with one of their quartets at the afterglow (the barbershop term for the after-function). However he is still really plagued by pain which doesn't seem to be diminishing at all despite the increase in amitryptiline - in fact worse over the last 2 days. Steve was a bit non-commital about the pain - Ross thought he said it would probably slowly improve. I thought he was talking about movement, not pain. However Ross will go back in 4 weeks and hopefully will have had the MRI and results in the interim. Will post some pictures of the South Island trip which was magical. Ross even had a wee ride on a horse around the paddock as well as a go at driving a excavator/digger and shifting a pile of earth. Also two amazing trips to the outback - Ross in 4WD and Dee on horseback!

Well EMG (electromyography) proved, as we suspected, that Ross doesn't have myocytis. He had an hour and a quarter appointment with neurologist Kiri Brickell on Monday. She was very thorough. She is certain Ross's pain is neurological in origin - caused by nerve and nerve root irritation, the distribution of which is complex, and her guess is that it is more likely secondary to the chemotherapy than the toxoplasmosis, though the latter is definitely the cause of the leg and foot weakness. She wants yet another MRI brain and spinal cord to overlay on the last one and see if there is further improvement. She also wants Ross to start yet another drug regimen to try and control the pain, involving increasing doses of Amitryptiline, Neurontin and Paracetamol, (as well as his toxoplasmosis drugs, anti-diarrhoea drug when needed, and Tramol for pain when it is unbearable!) until pain is lessened. This will take some weeks as Amitryptiline only gets increased by 10 mg a day for a week, and then a further 10 mg a day etc etc following which the increase in neurontin commences. No quick fix! So Ross sees her again 3 weeks after the MRI scans. Meanwhile pain is if anything worse. Nonetheless we're heading to the deep south - to Christchurch on Thursday and then to Castle Hill Station - (about 1.5 hrs from Christchurch - the highest habitated place in New Zealand) - for a bit of a reuinion with some of my old school buddies and their respective husbands, which should be great.

Spent Easter at Taupo Bay with the kids (and grandkid!) and cats. Weather was pretty good. Went for my first swim in 12 months - under close supervision - nothing too ambitious. Getting back on my feet is something of a problem when a wave knocks me over. The pains in my legs are getting to be unbearable, particularly after sitting for a period, and at the end of the day.

Going to work most days now, when I don't have clinic appointments or rehab.

Had a nerve conduction test where they give you electric shocks -quite strong shocks actually and poke needles into you. Results on Monday when I see the neurologist.

Anya and K&J's cats




My cousin Carolyn


...and her older daughter Michelle

Blood results, including ESR and CK, all normal. According to the GP this tends to negate Rae Varcoe's diagnosis of myocytis. Pain so severe last night it woke Ross several times during the night. GP has undertaken to do some research to find out what tests best to discern prescence of toxoplasmosis. Neurology appts not till 12th (nerve conduction studies) and 16th (neurologist) April. Guess Ross will just have to continue toughing it out. Not easy. We're going north to Taupo Bay for Easter with all immediate whanau and Ben who just about is whanau too, including 3 cats! Ross and I will go after work tomorrow, Wednesday, and come back next Tuesday. Land line there 09 4060937.

Ross went to the GP this am mainly to get referral letters to the neurologists for the upcoming appointments but also to point out that the thigh pain is no better, in fact is probably worse, and I also expressed my concern that there has been no testing for toxoplasmosis following the reduction in the sulphadiazine. I am also concerned that Ross's mental acuity has dropped off a bit following this reduction, though this could more likely be due to the neurontin he is taking. GP now taking things seriously and running a couple of tests and we will trial an increase in the neurontin (a) to see if it improves the pain and (b) to see whether it affects mental acuity. Blood tests for lymphoma etc taken today together with the GPs extra 2 tests.

We are both unconvinced that Rae is correct. Ross's pain is severe and debilitating and worse in the evenings. It is mostly now in his "good" thigh, and feels as though it is exploding from within. Nobody seems to have any idea. The paracetamol hasn't worked so will try the Voltarin from tomorrow but not holding our breath. The neurology appts are still more than a fortnight away. Also problems with the house - the new exterior paint fell off in parts and finally got the painter to come back for a meeting this morning. Goodness knows how long it will take to fix but have had to defer the marketing which was to have commenced this week.

Saw Rae Varcoe today to get referral for lymphedema treatment but she reckons that the L leg pain is due to muscle inflammation and recommends treating it with anti-inflammatories and rest. Bloods OK, LDH normal.

It's 6 months since my transplant. The other night I walked ("crutched") up the driveway for the first time in 7 months and went for a 45 min lurch around the neighbourhood. Back at physio twice a week. Have also been in contact with folks from the lymphedema support group and will get a referral from hematology next week to see them about therapy.

Said farewell today to Callum, a mate of ours - a fellow chemo warrior - who was in line for a transplant, but things turned against him.

Blood results were excellent. LDH has dropped which is great and all else normal. Pain in legs is however definitely worse to the point where we ended up at White Cross the night before last. They xrayed the leg and knee. Leg normal but knee has quite considerable calcification at the knee joint. There doesn't seem to be much treatment available for this but we will ask for an "opinion". Meanwhile Ross is going to work, though today has physio at rehab. He had a go at getting the car out of the garage the other day but it proved that at the moment driving is definitely a no-no. The house is nearly ready to market - I hoped this weekend but probably next week. Below is Anya at 8 weeks - I think she is like the genie in a bottle in this photo! She is just gorgeous and the light of Ross's life (and mine of course!)

Clinic appointment today with Richard Doocey. Didn't have blood results to hand - evidently a problem with the lab's computer - so hopefully will get those tomorrow but we are not expecting any surprises. MRI scans of brain and spinal cord were quite telling. Absolutely no sign of lymphoma (though there never was any in these areas). The largest toxoplasmosis lesion in the brain has now collapsed in on itself which is great news - ie the bugs have been dying. However there were a number of other toxoplasmic lesions in the brain which have not previously been commented on, though all seem to be tiny and because there are no clinical symptoms it is assumed all are improving. There was also a significant area in the spinal cord which had obviously had a large toxoplasmic lesion (previously undiagnosed) now resolving, in the thoracic area, which would not cause the lower limb symptoms which have troubled Ross. He is now going on to a new drug for his leg pain, which is really troubling him. Although the drug is not funded, special approval has been given so it will only cost $15 per prescription (whew what a relief). Also forms completed and given to Richard to send off to Pharmac to apply for funding for the sulphadiazine and pyrimethamine - fingers crossed. But the sulphadiazine has been reduced from 56 tablets a week to only 24 per week - huge reduction - so hope this continues to do the trick! In terms of the pain there appear to be 3 things going on - joint stiffness, particularly in the left knee, muscle cramping, and nerve pain which affects mostly the skin. Richard thinks a neurological opinion and some nerve conduction studies should be carried out. Because of hospital waiting times we will arrange this privately through the GP.

MRI scans carried out today uneventfully. Unlike the colonoscopy, we don't even get a hint of a result until clinic on Wednesday. Ross is very uncomfortable and pretty depressed as the pain in his legs and feet seems worse. He is due to have his first physiotherapy session at Rehab+ on Friday. Meanwhile went to work today after his scans.

Yes, colonoscopy today was clear of any lymphoma. It didn't really demonstrate any colitis either, but biopsies were taken. Rafiq Ali, who performed the colonoscopy, feels that the bowel tone has been affected by all the chemotherapy which is causing the persistent diarrhoea, and that Ross should just continue with the Loperomide and hopefully it will improve over time. This is all great news, and while neither of us really suspected that there was further colonic lymphoma I think there were times Ross had a few doubts. Unfortunately the diarrhoea has been rampant because of the preparation for the colonoscopy, so will need to stay close to home for the next 24 hours or so.
Other big news - Katherine & Joss are getting married! Yes Joss popped the question at dinner at C.A.C. on Valentines Day. Very romantic with flowers etc (while we were babysitting for the first time with expressed milk, which Anya took like a charm). We couldn't be happier. Like them, we think they were made for each other. They will be married this year but not sure where or when. They may delay until they go to the UK to visit in early October as all Joss's family will be assembled there at that time.

I think Ross's ability to walk has remained the same for the past several weeks which is disappointing as up until then his improvement had been steady. Unfortunately the joint stiffness seems to be worse, particularly in his "good" knee, which is making walking difficult. GP was not encouraging - suggested the neural pain may be ongoing as he had a patient with meningitis who suffered severe cerebral oedema and same problem with pain which has persisted. I don't want to believe this. Today Ross is having to prepare for his colonoscopy tomorrow, and the usual oral preparation (Glycoprep C) is not available in the country so he has to take an alternative which means no food at all for the prior 24 hours. That's pretty tough!
We had a quiet weekend but loved the cricket - Australia vs NZ - so exciting and it would have been fantastic whatever the outcome but the fact that NZ won put the icing on the cake! Still frantically trying to organise the house for sale.

Lower limb pain and joint stiffness definitely worse. Have trawled through drug side effects today and there is the possibility that it could be either of a couple of drugs Ross is taking, or possibly an interaction between two of them, so we are going to stop them both (not crucial in terms of the toxoplasmosis) and see what happens. It really annoys me that we have to do all the research! Also have made appointment to see GP tomorrow.

Yes, back from Taupo Bay and Ross has gone in to work today. Taupo Bay has been great - especially Waitangi weekend where we had both the children, their partners and our grand-daughter - a very special time. Also Ross attended his Aunt Hazel's 80th in Towai and caught up with a couple of siblings (Dianne & Dwight, and Jim, Deb & Alex), plus maternal cousins. He continues to be plagued by quite a lot of pain which now involves his hips and lower limbs, and the diarrhoea is still sufficiently problematic to be quite limiting. He has a colonoscopy booked on 20.2.07. and MRI scans of brain and spinal cord on 26.2.07. and will get results at clinic on 28.2.07. so will update this blog then. Also, while a neurological review has been requested, evidently a neurosurgical outpatient appointment has been made for mid April!