Ross 2006

November 2008 to April 2009

Tue, 7 Apr 2009 10:00:47 GMT

Time we updated all you good folks out there. I know you all check this every day and I feel a wee bit guilty that I don't update it quite that often.

On the health front, I had a haematology 6-month check clinic in December, when I was pronounced good for another 6 months. As far as the disability goes, I am making slow progress. 2008 was the year I started driving again, albeit in a somewhat unconventional fashion. I am now able to get about the place, to and from work, do some shopping etc. without too much hassle. Pain is easier to predict now, but still not all that easy to manage. One thing I miss more than ever is eight hours straight sleep.

Tom and Melanie paid a flying visit in September to attend the funeral of Tom's stepdad Frank in Whangarei.

November 2009 - Guy Fawkes at Ken and Louise's Elmore Rd property.

Brisbane Trip November 2008

Christmas Dinner with the Skinners

Shurli's Visit December 2008

Shurli was in Auckland to present a paper at a conference at AUT.

Christmas/New Year/Taupo Bay

This summer I swam in the surf (successfully) for the first time since rehab. As long as I pick the times when it's not too rough and have someone there to help me in and out I'm OK (if I fall over in the shallows I'm history). We spent most of January at the bay and had the usual mix of friends and family visitors.

Musical Directors Training Weekend Christchurch Feb 2009

This is a weekend put on by the local barbershop organisation to upskill chorus musical directors and associate musical directors.

Rotorua Marathon March 2009

We had a weekend in Rotorua supporting Steve and Margot and Liz and Kirk as they walked/ran the half-marathon.

I came 4th.

Whenuapai Airshow March 2009

Always a good day out.

October 2008

Sun, 19 Oct 2008 08:49:30 GMT

I was having lunch with Marcus, a friend/colleague, and he made the comment that the updates had become less and less frequent these days, which he assumed meant there wasn't much to report, i.e no news is good news. He's right I suppose.

Except that is, for the arrival of our second grandchild on October 18th, a brother for Anya:

With Granddad and Grandma (Bill and Avril Watson):

An excuse for a trip to Brisbane later this month I think.

Another three months till haematology want to see me. We both had the 'flu some weeks back and I started getting night sweats (classic #1 symptom of lymphoma) but my bloods are all fine so it was probably associated with the 'flu, which was the worst either of us could remember. Still, we live in fear...

I continue to go to pain clinic. They have given me an option of another course of Ketamine infusions but things seem pretty settled at present so I'll hold off unless things worsen. I have been getting leg cramps at night and they prescribed quinine for that (and to clear up any malaria I might have picked up) but it just made me drowsy (-ier) so I've gone back to diet tonic water.

House is back on the market.... Don't hold your breath.

Saul is currently in Hong Kong and China for 10 days or so. Doing some sightseeing with a Hong Kong friend of his. Sends the occasional text when coverage permits, and emails us, but the texts have more text in them than the emails do.

July 2008

Tue, 5 Aug 2008 11:52:47 GMT

Went to my first ever All Blacks test last Sat night. We sat in the rain with our thermos of hot chocolate for 4 hours and watched the aussies get thumped. It was worth it. Went home and watched it again on TV.

Katherine, Joss and Anya departed for Brisbane last week. They will look for a house until Joss starts his new job in September. I don't think it will be too long before we pay them a visit.

I was given the all-clear for another six months at my last haematology clinic appointment. The longest I have been without clinics (so far!). I still go regularly to Greenlane where they are trying to get a handle on the pain. I've stopped the Ketamine and am trying something else whose name I forget which is supposed to be similar but a tablet instead of infusions.

I went for a tumble down the outside steps the other morning when I slipped on wet leaves. A dent in my head but no lasting damage.

June 2008

Tue, 24 Jun 2008 10:22:37 GMT

A couple of weeks ago, I had a follow-up CT scan as a precaution after the ambiguous results from the CT I had in February. Yesterday we saw Steve Palmer (my haemotologist) to get the news and there is nothing to report really. Everything looks the same as it did before (which indicates it's probably carnage left over from the lymphoma treatment). The 'thickening' they saw last time has gone, so it probably wasn't there to start with. My bloods are all normal, so they don't want to see me for 6 months, which will be the longest I haven't been inside a hospital for while.

I've just finished my last session of 5 at Greenlane hospital. I go there weekly for an infusion of Ketamine. Its a drug normally used by vets to anaesthetise animals. It's also used to treat pain in burns patients, and some people use it to get high on as well. Anyway, it is supposed to treat neuropathic pain and it does seem to take the edge off it. The question will be whether it has a lasting effect. I sleep for about an hour while they put the stuff into me (and snore, apparently).

Anya continues to delight us. She's walking now and has learned to climb stairs (and fall down them) with ease. Katherine and Joss are expecting a little brother for her in October. They expect to be living in Brisbane by that time, as Joss has accepted a job offer from there.

We might have mentioned Dee's sister-in-law Carolyn, who was sick with an unusual viral type of illness some months back. We were shocked to find she had a type of lymphoma which is particularly hard to treat. Carolyn died two weeks ago, after undergoing 2 rounds of chemo. She was very much like a sister to Dee and we miss her terribly.

Easter 2008

Sat, 22 Mar 2008 09:04:26 GMT

A mild case of the jitters last month. I had a CT scan, partly routine, and partly because I had had a few night sweats. The CT showed thickening of the colon at the site of the original lymphoma, and the associated lymph node was enlarged. It looked very much as though I had relapsed and I was sent off for a colonoscopy. Dee and I had a real scare and it was a bit like it was just after I was diagnosed.

However the colonoscopy was completely normal, as were the biopsies taken. Steve Palmer concludes that the radiologist was playing it super safe over the lymph node. I have a follow up CT in 2 months but I'm confident it's a false alarm, though I don't think I'll ever stop looking over my shoulder...

I've started driving again, which is a great boost for my independence (and Dee's, as she now no longer has to taxi me around the place).

Easter at Taupo Bay, where it's still summer.

New Years 2008

Tue, 19 Feb 2008 09:26:21 GMT

It's a long time since we last wrote, and I was reminded of this by Uncle Bruce recently when I phoned. So here goes. I am back at work, riding the new busway every day to Albany. We both had a wonderful summer, with great weather, the usual collection of visitors. I tried swimming a couple of times, with mixed results. I'm OK as long as it isn't too rough, otherwise getting knocked over is a bit dangerous, as I can't right myself without help.

Pain is manageable provided I don't overdo it during the day. I'm trying a vitamin B1 supplement called Bentofiamine (see http://en.wikipedia.org/wiki/Benfotiamine) which is said to be effective for neuropathic pain and after a week I think it might be having an effect. I had a CT last week but don't see the haemotologist till next week for the results. More news then.

Had my third birthday since diagnosis. Heard from (among others) Blair, a guy from Canada I met in hospital in 2006. He has since had a stem cell transplant and is doing OK. I've started back at chorus and am off to Christchurch for a weekend workshop soon.

Tom and Melanie, Katherine and Joss and Anya, Anya trying on Dee's specs. Anya is now walking, and a bit grizzly (and drooly!) because of teething.

Dee's sister Timmy.

Ben's parents, Sue and Alan were visiting from Toronto. Also Ben's girlfriend Jean-Marie.

Not quite Opera in the Park - in Mangonui actually. A concert with three very talented performers (tenor, soprano, violin). Also a view of the partial eclipse of the sun.

A warning not to expose feet to the sun when they haven't seen much daylight for 2 years. Probably exacerbated by some of the drugs I am on causing photo-sensitivity.

Dec 26, 2007

Wed, 26 Dec 2007 10:13:52 GMT

Anya (one year and four days old) wants to wish you all a very happy Christmas and a safe new year.

December was a little too eventful for us. I had a "swarm" of night sweats so moved my next appointment with Steve Palmer forward a month. Bloods look OK, LDH is fine and he could find no other lumps and bumps so I was happy again, though I'll have a CT in the next few weeks to be sure. It's just on 2 years since I was diagnosed.

Dee had a minor skirmish with atrial fibrillation (an arrhythmia of he heart) which put her in hospital for a few days and gave us quite a scare. Subsequent tests have found nothing so we're hoping that's the last of it.

Dee's sister-in-law Carolyn (Barry's wife) is still fighting an as-yet-unknown illness and she in never far from our thoughts.

We're now at Taupo Bay with Katherine and Joss and Anya. Saul is working through but will probably be up New Year's Eve.

Anya continues to provide us with much enjoyment. She is at a lovely age and finds most things and people highly entertaining.

I'm enjoying being here - its a much easier house to work on, though every task tends to take several times longer because of my lack of mobility. I tend to put a lot more thought into what tools I will need to take to do something, because it's such an effort to have to go back into the garage to get something forgotten.

I'll try swimming again in a few days.

Thank you all for the support and love you have all shown us over these last 2 years. I do read your comments - honestly - and it is really nice to hear from you and know you are thinking of us..

Photos from Europe Trip

Sun, 28 Oct 2007 10:15:33 GMT

The Sentosa Resort and Spa, where we stayed for 3 nights on the way back

Lunch guest

Moe lunch guests. These buggers would conduct lightning raids on the unsuspecting diners below.

Rome

St Peters square from our sightseeing bus.

Tom and Melanie, guides extraordinaire.

At the Roman forum.

The "PopeMobile", parked where no vehicle could go.

One of the locals at the colosseum.

Cafe near the colosseum. PopeMobiles enjoy the same parking priviliges as wheelchairs and baby strollers.

At the chariot racetrack, where they filmed the chariot races for "Ben Hur".

Trusty GPS. Right most of the time, if you were quick.

We got a bit lost when returning the PopeMobile for a freshly charged one, and the battery ran out.

St Peters Square of the Vatican.
.

Flat tyre

Venice

San Marcos Square.

Note the water seeping through the manhole cover. At spring tide it covers the square, floods the shops and they put down raised walkways to keep the tourists dry.

Street vendors. You could get a Gucci handbag for 7 Euros.

A glass of red wine at sunset, sitting on the platforms they put down when it floods.

This superliner blotted out the sun when it passed.

San Marco

We got ushered to the disabled lift to go up the bell tower at San Marco so we were the only ones there when 9 o'clock struck.

San Marco at 9am

Bronze horses atop the Palace of the Doges.

Taken in the days when they used pigeons for text messaging.

One of the disabled lifts over the bridges in Venice. What we failed to appreciate is that it was the lifts that were disabled. We never found one that worked.

Carving depicting dance move made popular by Michael Jackson.

(She's not real). Our hotel in Venice was near the only park in Venice with many sculptures, old and new.

Farewell Venice.

Murano

An Island a short trip from Venice, famous for its glass.

0208
0212

Santorini

Bill Watson (Joss's Dad) with grandaughter Anya)

Great Uncle Gordon

Avril and Anya, Kate (Joss's sister) and Joss

Saul and Melanie

Our Santorini Sunny Villa

A large number of the buildings in Santorini were left at this stage of construction. Nobody could tell us why.

Bridesmaid Lydia

Views from breakfast

First day at a beach

Katherine and Joss's Wedding

Athens

The Acropolis/Parthenon

The Temple of Zeus

An amphora dating from 510 BC

The worst Caesar Salad I've ever eaten.

The Pickpocket. This ratbag managed to lift my wallet as we were getting onto the bus for the airport. He was
nabbed by the police but must have offloaded it to an accomplice. Our trip to the airport was interrupted by a detour to the Police Station.

Bruge. Sometimes known as "the Venice of the North" because of its canals. Like Venice, it grew wealthy through
being a centre for trade.

Brussels

The main square. Until the late 1970's, this was used as a parking area. It is now a beautiful paved area surrounded by restaurants, pubs and chocolate shops.

A sculpture commissioned for a science fair held in Brussels.

Parliament buildings.

An exhibit in the Musical Instrument Museum. This was one of the original saxophones, made not surprisingly by a Belgian bloke named Adolphe Sax.

Our hotel on the left, just a quick walk from the square.

A short drive from Brussels are these two canal locks at Strépy-Thieu, the first built 1900-odd, the second in 2000. The older one is a hydraulic system, the newer one lifts and lowers the boats and water with electric motors.

Dinner at Tom and Melanie's. Two large chickens in a Weber barbequeue. We were joined by Tim Edwards, another inmate of Whangarei Boy's High School, who now lives in England. He came over for the night by train.

Amersfoort

Our dear friends Dick and Henriette met the train from Brussels.

This a replica of a sailing ship 'Batavia'. In 1999, the new Batavia was transported to Australia by barge and moored at the National Maritime Museum in Sydney. In 2000, Batavia was the flagship for the Dutch Olympic Team during the 2000 Olympic Games. In 2001, the ship returned to the Bataviawerf in Lelystad where it remains on display to visitors.

The original Batavia was a ship of the Dutch East India Company. She was built in Amsterdam in 1628, and had 24 cast-iron cannons. Batavia was shipwrecked on her maiden voyage, and made famous by the subsequent mutiny and massacre that took place among the survivors.

One of hundreds of wind turbines on the farms.

The 'X' marks the geographical centre of the Netherlands. It is in the town square at Amersfoort.

Venice

Sun, 30 Sep 2007 08:27:25 GMT

hi again

Well here we are in Venice. It was with great reluctance that we had to part with the popemobile even though it had its moments! Came down by train yesterday and it was meant to take 2 hrs and took 4, breaking down in \padua. Everyone had to transfer trains. \however it was a glorious day and nothing mattered. \it was quite good to catch up on some reading and relaxing. We are staying in a quaint little b and b here in Venice but unfortunately our room is up a couple of flights of steep stairs. \oh well.... \last night had dinner at a lovely little restaurant backing on to a canal about 10 metres from the hotel but it was very very expensive so won't be repeating that trick \ie equivalent of about $400 for the 4 of us.\ Today just out and about. \This wee b and b is spotless and quaint. \looking forward to pottering about Venice. Tom has got a wheelchair for Ross from the local pharmacy / they give them to you for nothing as part of their disability access programme! So that will make getting about much easier. Ross has learnt to pace himself. And yes \i think in Santorini we will definitely get some form of transport. This keyboard is a bit funny so will stop now.

Overseas Trip

Sun, 30 Sep 2007 08:24:02 GMT

We had a great time in Singapore. Hotel was very nice. Took a bus tour the day after arrival which was pretty tough on "Ross - 5 stops and had to "look around"at each stop - some more than a km. While all interesting it really took its toll and Ross was in a lot of pain. However loved Singapore - so clean and attractive. Buildings high-rise but all had space and green around them. Much better planned than Auckland. temperature ideal for us - warm and humid but not hot and steamy.

Plane to Rome was awful. I was in the middle of 3 and couldn't move. Ross in a lot of pain so not easy for him to get in and out of his seat - ie clambering over the arm of the seat very difficult. Waited a couple of hours at the airport for Tom and Melanie to arrive from Brussels and all taxied to hotel at 300 km ph.

Nice little hotel and relatively inexpensive. First day here we took a bus tour and got out to see Trevi Fountain and walked to Spanish steps. However Ross was grey with pain and although sights amazing it was very taxing. But next morning Tom organised the "popemobile" - like a golf cart except has lights and indicators and can travel on the main road. We have been zipping around at speeds up to 70 km/hr in busy Rome traffic with Melanie and I hanging on for grim death on the back. More terrifying than a space mountain ride at disneyland really! But what a boon. We can get right to where we want to go and virtually park it on a sixpence. It has been absolutely fantastic.

So first day with that had the most amazing day zipping around and seeing all the sights - colosseum, forum, circus maximus (where the chariots raced) etc etc. Amazing. Yesterday went to the Vatican - the queue was about 4 km long to get in but Melanie went to the front of the queue and arranged a wheelchair for Ross - we took the popemobile right to the front of the queue and Ross used the wheelchair - made such a difference as we must have walked miles round the Vatican. Also saw the Vatican art gallery - mind blowing. And the good news is that with the advent of the popemobile and a good night's sleep Ross's pain reduced hugely and now he is quite comfortable. Yesterday we did get caught in some heavy rain and coming back to the hotel from St Peter's Basilica was pretty hairy - got up a blind alley and ended up having a wee prang with a parked car - wiped out the wing mirror of the popemobile and the rear tail light of the car- this after having run out of battery earlier in the day and having to get Tom and Melanie to get to the hire place and bring someone out with another battery - but all worth it! But I must say that by the time I got back to the hotel last night I was FREEZING from clinging on to the back of the thing in the pouring rain and drenched! It does have a lid over the top but it doesn't extend over the knees. Great for shade but not so good for rain. However a 10 minute hot shower and dry clothes and back out to dinner but everyone was falling asleep.

We have been sleeping really well here in Rome (Singapore not so good) - Ross has had better sleeps than he has had for months and I've been doing well too which makes it much easier through the day. So now only 8 days till wedding day. Can't wait. Looking forward to some warmer weather too - here it was warm on Day 1 but now about the same as Ak, though the room remains warm at night. Today heading off again around and about in the popemobile and tomorrow morning head off to Venice by train. However there is a strike so Tom has just gone down to the station to find out whether the train will actually run - whoops - he has just come back and found that the popemobile has a puncture so we will have to deal with that now! It's all fun and an exciting adventure. Tom and Melanie are just wonderful travelling companions.|

20th September 2007 - 1 year post-transplant (Dee)

Wed, 19 Sep 2007 20:28:28 GMT

Well quite a lot to report. Ross has been a bit remiss with his blog. Firstly his pain has continued unabated and has been a real problem. Finally he got an appointment at the Pain Clinic and saw a young woman - Anna Inglis - who was very helpful - really thorough interview and examination - and had a few good suggestions. Also discovered he is Vitamin D deficient (having been inside for the past couple of years really) so he is taking supplements. He is trying slow release Tramadol twice a day. This is significantly stronger than the previous Tramadol he was taking, and because it is slow release doesn't have quite the same side effects of sleepiness etc. He thinks it has helped. Also magnesium for the cramps. However the pain is still a real bugger. The hope still is that over time it will diminish but he feels it reached a plateau several months ago, as has his movement. He has, however, mastered the art of walking with one crutch. Still can't walk far. Stiffness is still a real problem - takes a minute or two to straighten up from a chair, and turning over in bed is still a real mission with both severe pain and stiffness. All this of course secondary to the toxoplasmosis lesions that were in his brain and spinal cord which have caused scarring.

Clinic appointment at Haematology Clinic at Auckland Hospital yesterday re the lymphoma - exactly one year and one week post-stem cell transplant. He saw Rae Varcoe. The MRI scan report from a month ago was reviewed which had showed further slight reduction in the size of lymph nodes, and physical examination showed no enlarged lymph nodes. His blood tests were all great - a bit anaemic which is par for the course post-stem cell transplant. He has now been officially declared in remission and has been discharged from Auckland Hospital Haematology, to the great wide community and will be followed up at the Haematology Clinic at Green Lane Hospital, next appointment in January, with blood tests every couple of months.

We are both a bit euphoric about this. Ross had been dreading this appointment - thinking it was going to prevent us from going overseas. Not so! So our trip is:- Depart Sunday 23rd September, overnight Singapore, then Rome and Venice for a week where we will meet Tom and Melanie, then the four of us fly to Santorini Is in Greece. Katherine and Joss get married on the island on 6th October. We depart 10th October and have a couple of nights in Athens with Saul (yes he's going too) and then connect up again with Tom and Melanie in Belgium for 3 or 4 days, then Netherlands for 2 nights (will catch Dick and Henriette) and then finally we are having a 3 night stopover at Sentosa Spa & Resort in Singapore - home on 21st October. Big adventure! Can't wait. And we'll get him some sun to top up his Vitamin D.

Thanks to Russell for the photo taken yesterday.

Friday 10th August 2007

Fri, 10 Aug 2007 10:26:25 GMT

Spoke to Steve Palmer today. Results of my PCR test for toxo are in finally - negative for toxo. Second attempt as the lab lost the first blood sample I gave. Had a CT a week ago and the report says "minor improvement in the mesenteric lymphadenopathy", which doesn't sound like startling news but I think it lends weight to the theory that all that is left is scarring. As Steve says "things look pretty good really". He doesn't want to see me for another 2 months.

I am going to my first Transplant Survivors Support Group meeting later this month. A group I am glad to be a member of.

Anya, me, and Rosa (Rosa is Melissa and Sean's daughter - Melissa is the daughter of our dear friend Dael, who died a year ago).

Sunday 8 July 2007 (Dee)

Sun, 8 Jul 2007 10:31:08 GMT

Pain hasn't improved one iota - in fact seems worse and now complicated by severe muscle cramps in his feet and legs at night. Got a call from his haematologist today (yes on Sunday!) to say he had discussed his case with his colleagues at the Pain Clinic who feel they have nothing to offer except "coping strategies". This has been a real blow. Of course Ross will take advantage of anything but we had our hopes pinned on a bit more than that.

7 July 2007 (or 7/7/7, if you're interested)

Sat, 7 Jul 2007 00:02:13 GMT

Clinic appointment yesterday. Nothing to report, all bloods normal, LDH 184. I'll have a CT in a few weeks and tests for toxo every 3 months.

My first singout of 2007:

The world's most contented cat:

20.6.07. (Dee)

Tue, 19 Jun 2007 21:29:34 GMT

Pain continues unabated - worse towards the end of the day. Not due to be seen at the hospital again until 6 July so may phone before then and get a referral to the Pain Clinic. Balance is now negatively affected because of leg cramps so whereas previously could get around shortish spaces without crutches now this is more difficult. Hope to get a car within the next week or so and get it modified which will make a big difference. Nothing on paper re house sale and haven't seen anything suitable to move to. Open homes Sat/Sun/Wed are a pain!

11.6.07. (Dee)

Sun, 10 Jun 2007 23:52:53 GMT

Open homes here again this weekend. Lots of people through but nothing on paper yet. Most interest is from our next door neighbour! We have been looking at open homes ourselves but have become increasingly despondent about finding anything suitable, and it's very hard for Ross as his pain is really limiting his mobility. Terrible night last night and we both got a bit down - neither of us got much sleep because of Ross's pain, but Ross much more sleep deprived than me.

8.6.07. Driving Assessed! (Dee)

Fri, 8 Jun 2007 00:53:01 GMT

Had driving assessment yesterday using a left hand brake and accelerator and did pretty well, so assessor will write to GP who will give the all clear for driving. We need to upgrade the car and get it modified but that will give Ross much more independence! Unfortunately the pain afterwards was just about unbearable - a ghastly night.

6.6.07. Spoke too soon?

Tue, 5 Jun 2007 20:25:39 GMT

Well we may have celebrated too soon. Ross had his first full day back at work yesterday and the pain/stiffness was present with a vengeance. The pain/stiffness may just have been a bit better as he was more rested last week having been picked up after only a short stint at work and returning to bed because of the LP side effects.

4.6.07. Good News! (Dee)

Mon, 4 Jun 2007 00:53:46 GMT

Results of lumbar puncture show no active toxoplasmosis. That is indeed good news and Ross can now discontinue the sulphadiazine, calcium folinate and pyrimethamine.
Second good news is that after increasing the gabapentin (neurontin) to 5 x 100 mg tablets daily for a week there seems to be slight but definite improvement in the level of pain/stiffness - Ross notices this particularly when getting up out of a chair. On 6 a day he became dizzy but he will stick with 5 a day for a further week and see how it goes. The neurologist has phoned again - she says he can even go up to 2500 mg a day which seems enormous but she insists it is quite a safe drug (though of course has side effects of dizziness and unsteadiness etc when at maximum tolerable level). So Ross will continue to tinker with it.
Not so good have been the after-effects of the lumbar puncture. Ross has had quite severe headache for a week, and each day I would take him to work but had to pick him up as he was so unwell. However after a bit of rest this weekend it is much less intense and only present after exertion or at the end of the day.

30.5.07. (Dee)

Tue, 29 May 2007 21:00:36 GMT

Dropped Ross in town this am to catch the bus to work and just about got home when he called me - recurrence of the severe headache and nausea with accompanying neurological symptoms - so U-turned - he is now sleeping in bed after taking requisite medication. Hopefully he improves as quickly as he did yesterday.