Wednesday, 13th January 2016

Monday was my first day back at work for the new year.  And here I sit, as I have done a number of times since we got back from holiday on the 5th, trying to get my writing brain to kick in. The holiday certainly did us good.

The start of another year and I have to say this was met with many mixed emotions for me.  On the positive side I wanted to put 2015 behind me and start afresh with good, positive thoughts and embrace the new year and any of its challenges.  We are usually camping over new years and not very big on staying up to see the new year in.  We had planned to go to bed but ended up doing a late braai at the campsite, sitting around the fire and before we knew it there wasn't much time left till midnight so we stayed up.  Once I got into bed I felt a bit down and a tear or 2 spilled quietly down my cheek as I lay next to Jimmy wondering just what 2016 will have in store for us.  Will I continue to be strong enough to face the hardships that come with this terrible disease? Am I fooling myself into believing that this will be the year of good things as surely we have faced enough turmoil together?  Cancer, chemotherapy, bone marrow biopsies, waiting for results and the constant believing that this new treatment is going to do the trick are hard enough.  They take their toll but I think the biggest hurdle I have faced to date is Jimmy going into hospital with pneumonia and then into ICU and being ventilated.  It came out of nowhere and nearly took him.  I then wondered how I could be excited about celebrating the start of a new year when we are nearly 2 years down the line and isn't another year just bringing us closer to when he could come out of remission?  But as I lay there thinking I realised that is not a road I can go down. 

And so on this note I reflected on 2015.  In spite of the many hurdles we've had again with Jimmy's health, the positives still out weigh the bad big time.  21 Months since he was diagnosed and it certainly changes your perspective of life.  In so many ways this has been such a good thing.  As we have gone into 2016 we are thankful for life and we will continue to count our abundance of blessings.  From both of us....a heartfelt thank you to you for all your love and unfailing support.  Our wish for you is that 2016 will be everything you hope it to be.

On the medical side of things Jimmy is relaxed and rested and a number of friends have commented how well he is looking.  We had a full blood count done once a week while we were away just to keep a watchful eye on things and have come to the realisation that his platelets really just do their own thing.  We were super excited that after the 1st week they came up from 40 something to 50 something and in the subsequent 2 weeks right up to 70 something.  The next week they were back down to 50 something.  We got home last Tuesday and on Wednesday he went to UCTPAH to have his bloods done and they were back up in the 70 something.  There has been nothing that we can pinpoint as to how they have varied from week to week.  Jimmy even gave up drinking any alcohol, Becks non alcoholic beer is his new best friend, and this made no difference either.  Our fabulous news is that the authorisation has come through for the NPlate injections at R60 000.00 a pop so he should start with these in the next week or 2.  We not sure yet whether these will be administered weekly or monthly but will find out all the info at our next appointment with Prof.   Hopefully this will do the trick and increase his platelet count.  The next step would then be going onto maintenance therapy to keep the Multiple Myeloma counts from increasing, which he should have started in March last year already. 

We had a fabulous holiday over the festive season.  Our kids joined us for the first 12 days and we did so many fun family things together.  We enjoyed our evenings playing cards or just chatting around the camp fire.  We came home for 3 nights over Christmas to bring the kids home and spend Christmas with Jimmy's folks and then Stan and Michelle met up with us back in the Garden Route.  We spent 22 days in all camping at Keurbooms Lagoon , George and Nature's Valley.  From lovely walks along the beach, kayaking up the Storm's River mouth, Zip lining in Tsitsikamma, walking across the suspension bridge, a ferry boat trip up the Keurbooms River and watching Polo at Kurland to name a few.

Zip Lining at Tsitsikamma Adventure Falls

 

Camping at Keurbooms Lagoon

One of many swims down at Nature's Valley

Having a rest on the scenic walk to the suspension bridge

 

Kayaking up the gorge at Storm's River mouth

 

Camping at Tsitsikamma Sunrise near Nature's Valley

A visit to the Transport Museum in George

 

On the Ferry going up the Keurbooms River

 

A picnic on a little beach up the Keurbooms River


 

The suspension bridge at Storms River mouth

Lunch at Marilyn's 60's Diner at Storms River Village

Camping in George

Visiting the dairy farm

Watching POLO at Kurland

Mezze lunch at Bramon

Camping Jaffles with left overs

A scenic drive up the old Bloukrans Pass which is now closed

We eagerly awaited the 6th of January for Loren and Shannon's matric results and are super proud of them both for achieving a Bachelor's pass (university entrance pass).  Loren passed with an A and a B for 2 of her subjects.  Emma also had a good report and goes to Grade 11 today.  It's hard to believe she is now our last child attending school.  And then a big congratulations to Bradley who finished his first year and did so well.  We are very proud of you all.  Our other exciting news is that Loren has had a host family match and will be leaving on the 29th of February to go and Au Pair in Stephens City, West Virginia, USA for a year.

We missed our Megan more than normal over the Christmas period, her absence was very noticeable during our special family time together.  She is nearing the end of her contract now and will be home around the 22nd of February for a vacation before her and Cosmin return to Norwegian Cruise Line for another contract.

Megan and Cosmin on New Year's Eve on the Jade

Thursday, 3rd December

A special day for a blog update....

Jimmy, as we celebrate our 10th Anniversary I look back on an amazing 12 years together.  We have travelled many awesome roads, the last two having been a detour that we never chose but I thank you from the bottom of my heart for never giving up.  I love you more than words could say.

Jimmy had been booked off till the 6th but our wonderful news is that he went back to work yesterday.  I expected him to be absolutely bushed but he was fine and didn't even fall asleep in front of the television last night.  It's been full steam ahead here as Jimmy has been working from home and increasing his laps in the driveway twice a day from 12 to 20, which has really helped to build his strength up.

Jimmy popped into the chemo clinic on his way home yesterday to have his bloods done and these are holding out nicely.  His white blood cell count is up to 6.2 (normal 4-10), haemoglobin and red blood cell counts still a little low at 11.7 (normal 13-18) and 3.60 (normal 4.5-6.5) respectively and his platelets have dropped slightly to 49 (normal 150 to 400) but still a way off the dangerous 30.  He needs to go in for the day next Wednesday to have another Polygam infusion, double the dose this time, which will take about 7 to 8 hours to run through and will then receive this on a monthly basis.  Prof and the medical aid are still busy with the motivation for Nplate so he will continue on the cortisone dose of 7 tablets a day to try and maintain his platelet count.  We pray this doesn't affect his immune system in the meantime and continue to take his temperature twice a day to prevent any surprise infections.  Jimmy passed Prof Wilcox, the pulmonary specialist who attended to Jimmy in ICU, in the passage yesterday.  Prof stopped him to congratulate him on how well he is looking and added "our haematology patients who come in with pneumonia and septicaemia usually die".  Quite blunt but it brings home the truth of how blessed we are once again.

And so life goes on.  We have had to do a bit of reshuffling with regards to holiday plans as we had booked to take the caravan up to the Kruger National Park and spend some time travelling up through the park and then 3 nights in the Limpopo National park as we worked our way over to Mozambique for a 7 night stay at Cumbini.    Unfortunately due to the Malaria risk and Jimmy not being able to take prophylactics we have put this all on hold now until 2018.  We have decided to go up the Garden Route and camp at Keurbooms and George.  We'll leave our caravan up there and bring the kids back on the 23rd and then we'll go back up and camp in  Tsitsikamma where we will hook up with Stan and Michelle till just after New Years.  We have also made arrangements for Jimmy to have his bloods done once a week while we are away.  I'm looking forward to some relaxed family time with the kids as I think this will also be the last December camping holiday that we all spend together barring Megan.  With only Emma left in school the older ones are spreading their wings and making their own plans arrangements these days. 

I had a lovely chat with Megan yesterday and caught up on all her news.  Her and Cosmin are very tired and feeling the stress of a 74 hour week at the moment.  The only day they get to go ashore is on a Monday when they are in Cozumel, Mexico as the other 2 ports are charter ports and they have work.  But they have found a lovely resort which they visit each week and spend some special time together away from the hustle and bustle of ship life.

I have one more week of work left so I've been very busy with the books, getting ready for my staff's year end bonuses, doing the VAT return ahead of time which is due at the end of the month etc.  I have also spent 6 hours this week working through medical aid claims that have been rejected due to a hundred reasons, like incorrect ICD 10 codes, and all beyond my control.

I'm not sure if I'll update again before Christmas as we go on holiday next Friday but in case I don't.....

Thank you to each and everyone of you for all your support, encouragement, prayers and help during what has been another difficult year.  From my side this is what has gotten me through some very dark days and made me stronger so that I could be there for Jimmy.  I have truly counted my blessings this year. We are both feeling very positive about next year and it's nice to know that we not starting the year off with a daunting stem cell transplant as was the case this year. 

Jimmy and I would like to wish you a Merry Christmas, happy holidays and safe travels if you are going away.