2015/08/11

Tuesday, 11th August

The days, weeks and months go by and we have definitely learnt the important step of taking everything in our stride and not getting too disappointed about low results or super excited when there is an improvement in results because just like the days that seem to flow into each other these results drift up and down and there is still no end in sight.  A process of elimination is probably the best way to describe Jimmy's treatment at the moment and I suspect it is going to be like this for some time forward.

We are now in our 8th week of Jimmy being on Cortisone,  taking 12 tablets a day, which is starting to show as he is quite bloated and puffy.  When last I blogged Jimmy's platelets had improved and come up to 121. Prof decided to do another two weeks on Cortisone at that time to see if there would be a further improvement and when Jimmy went for bloods on the 3rd August (last Monday) they had dropped to 113.  The clinic phoned to tell Jimmy that they wanted to do more bloods on Friday to see where his platelets are standing and they had come up very slightly again.  Unfortunately this was done after hours on Friday and I wasn't with Jimmy so we never got a printout and I can't remember what the count was.

Prof will have a look at these results today and then we wait for a decision as to whether he is going to ween Jimmy off the Cortisone over the next 6 weeks or continue taking them for now.  Now you understand what I mean....we are no further along in the treatment as compared with when I last blogged in July and also not any closer to starting the Thalidomide maintenance treatment.  Some very positive news is that Jimmy's white blood cell count is now up to 7.8 which is the highest it has been and sitting nicely in the normal position.  Red blood cell count is a little low and haemoglobin is also sitting in the normal parameters. 

It's actually quite hard to believe that Jimmy is battling with low platelets as he is doing so well and not showing any signs or symptoms of a low platelet count.  He is back to playing golf every Saturday and doing lots of travelling. Out of the last 9 weeks he has travelled during 7 of them. 

Last Sunday we drove up to my parents in Bredasdorp in separate cars, Jimmy visited for the day and then I stayed and spent a few days with them and came home on Wednesday.  It was a nice break to get away from home and the timing worked well too as Jimmy was away.  I thoroughly enjoyed spending some quality time with my Mom and Dad as a weekend is always too short to catch up and when they come to Cape Town they always have a million and one things to do.

I am very excited as my Mother and I will be going to Europe together on holiday in October.  We will spend a few days in Venice and then do a 7 days cruise on the Norwegian Jade which is the ship that Megan works on.  The ship ports at Dubrovnik and Split in Croatia, Piraeus in Greece and Kusadasi in Turkey with the cruise starting and finishing in Venice. Needless to say there is a lot of itinerary planning going on and we are already counting the days.  Who cares about whether supper is cooked when I can sit in front of the computer and dream about a gondola ride up the Grand Canal in Venice.......sigh...


Life as it is has come back to a relative normal.  I find that my days are busy again and I am not as pre-occupied with Cancer as I was in the past.  Make no bones about the fact that it never does actually go away and becomes a piece of your make up.  There is still the dreaded thought that something is not working because maybe the cancer is back or I find myself wondering how long remission will be.  But these are 'short' thoughts and it's good to be able to talk about the future again.  Whether it's this time next year or a camping trip when the weather starts to warm up.  It also took a huge adjustment on my part when Jimmy went back to work and when I think back now it must have been terrible for him.  All he wanted to do was climb back in the saddle and have normal days and here I was being selfish and feeling like I had no worth left.  But this too has passed, I'm not sure when but the realisation did hit me, more than likely when I realised that it is nearly 4 months that Jimmy has been back at work already.  When I think back over the last 16 months of our life it feels like an eternity and I still can't believe that is was so hard and we made it.

Make it we did....and I have so much to be thankful for.

3 comments:

Lorna A. said...

I know it is probably very little consolation as Jimmy's doctor wants he to have maintenance, but Mike's platelets are still hovering between 100 and 125 four and a half years after his SCT.

Vivienne Smith said...

Hello Lorna.

So nice to hear from you again. Yes, thanks for this, I have heard from one or two other people that low platelets could be a permanent side effect of the stem cell transplant. It's all a bit confusing and am wondering that if this is a problem why Prof can't use something else as maintenance that won't lower the platelets count further. Oh well, as I said, trial and error. I am sure this is the case for Jimmy as he is very well otherwise, not even any bruising.

I caught up on your blog this morning and have to say I am so impressed with your running. Go girl!!! You made me feel very lazy as I have not done one ounce of exercise since April last year when Jimmy was diagnosed.

Hope you guys are hanging in there, I think of you both often
xx

Unknown said...

Hi Vivienne and Jimmy, great to hear that Jimmy is going along so well!!! Stay as positive as you are, no-one knows if, when and how things might turn out, so all you can do is make the most of what you have, and hope it all turns OK...

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