Thursday, 20th November

This has been such a roller coaster week for us....

At the time of my last blog we were floating in the clouds because we had heard that the decision made by the panel of professionals was to go ahead with SCT (stem cell transplant) and then continue with chemo after.  We were hoping to get some news last Friday as to when the whole SCT process would begin.

I had resigned myself to the fact that we weren't really going to have a Christmas this year as Jimmy would be in isolation where only I can visit him and this would be every day for a minimum of 4 weeks.  This time period obviously depending on how he copes with the treatment.  We didn't hear anything on Friday so we were anxiously awaiting some news on Monday.  On Monday Jimmy phoned Ilhaam but she was on a course for the day so he tried again on Tuesday when he was told it was a 2 day course.  Of course he was eager to get hold of her on Wednesday morning for some news.  I told him that she would probably be catching up with work on Wednesday so hopefully we would get some news on Thursday.  He did speak to her on Wednesday and she said that she had forwarded the official approval from the medical aid to Prof but had not received any correspondence from him yet. 

On Thursday (this being yesterday) morning Jimmy phoned her again and she told him that she was still waiting for the 6 week plan from Prof but that he had discussed Jimmy's case with her very briefly last Friday and thought that it would be best to postpone the SCT to January due to all the holidays.  This was devastating news to both of us.  I can't even explain to you in words how this made me feel.  Jimmy finished his last cycle of chemo on the 20th of October so it is already just over a month of no treatment apart from his monthly Zobone (calcium) infusion.  If we wait till the beginning of January for SCT this means sitting at home for two and half months waiting and in the meantime no chemotherapy so what is happening to his cancer counts? Jimmy is desperate to get this behind him and return to work as soon as possible.  I tried to be strong but this was a huge blow.  It's very hard to be strong, stay positive and keep fighting this terrible disease when we feel like we are just puppets and have to go along with whichever string is being pulled.  I was completely devastated.

I decided that I would phone Ilhaam but wasn't sure of which course of action to take.  Jimmy and I both feel that we have not rocked the boat and not even once demanded to speak to Prof about anything.  So I decided to first phone the medical aid to find out what the norm for this sort of thing is over December.  My plan was that if it is possible to have SCT over December but not the norm that I would play the emotional part and beg that a plan be made.  If it is normal to have SCT treatment over December then I was going to go the whole 'this is unacceptable' route.  The information I was given is that it depends from hospital to hospital and the doctors make the decision.  I then phoned a dear friend who has good ties with these kind of procedures to ask her what she thought of this whole situation.  She explained that Prof is a very respected Oncologist and didn't think it would be a decision he would make lightly.  She explained that SCT is not a mickey mouse procedure and that hospitals do not work on a skeleton staff over the Christmas period but because so many staff are on leave they make use of agencies for temp staff.  There is the possibility that you could have one doctor doing the morning round and another one doing the afternoon round and she is sure that Prof would prefer to do the SCT when he feels confident that his own staff are there and available.  I did see the whole picture in a different light after this but still felt angry because they do SCT all the time and must have known some time ago that due the delay with the medical aid asking for another bone marrow biopsy it was pushing the procedure closer to Christmas and it would have been nice to have some communication from their side explaining that time is running out for this year and the reasons, instead of dropping this information that wasn't explained at all, like a bomb shell on us.

Jimmy and I both spent the rest of yesterday trying to get hold of Ilhaam or Dr Fine to get some answers.  Eventually Jimmy decided to send Ilhaam an email explaining his concerns at the delay from a medical point of view as well as from a work point of view.  He got hold of her later in the day and she said that she had forwarded his email to Dr Fine who would discuss it with Prof and they would come back to us.  Oh boy.....this waiting game is a killer.  I definitely have come to understand the term "when something eats at you like a cancer" !

Last night at about 11:30 we received an email personally written to us by Prof.  He explained that he understands our concern and Jimmy's need to end the period of 'sick leave' with regards to his work.  However, because the procedure requires first to harvest stem cells, which in itself takes 2-3 weeks, they would not be able to complete everything this year.  He explained that a SCT is a routine and effective treatment for patients with Multiple Myeloma. But it is also a heavy treatment which can lead to organ failure, eg kidneys or heart, that requires the assistance from other disciplines.  He has learned through experience that Christmas and New Year are a bad time for such therapies as if there were to be complications, most the people they rely on are on leave and then they all close for 2 weeks in January.  He said that he is happy that we harvest stem cells this year, but will have to postpone the transplant to mid January.

We are both happy with this decision, in light of the fact that there is nothing else than can be done.  Prof has basically met us half way by splitting the procedure in half, time-wise.  This means that Jimmy will go back to work a bit later that he anticipated next year (although it does still fall into the time frame that Prof advised in the medical report that was sent to Komatsu) but not as late as should the entire procedure have been postponed till mid January.  Another positive is that to stimulate stem cell growth prior to harvesting them, Jimmy will have to have a course of Neupogen injections for close on a week.  This is the same injections that I have been giving him to bring up his white blood cell count after each heavy dose of chemo.  In my opinion this would mean that his immunity would not be as compromised as it is now and we would possibly be able to do a few outings with the kids over the Christmas period.  Obviously everything would have to be in moderation as he does tire extremely quickly.

So....once again we have a plan in place and we can move forward.  Thanks again for all you messages of support yesterday.  Thanks to Mike, Kathy, Patsy and Maureen for lending me you ear, for the hugs and the much needed cup of coffee.  I bumped into Mike and burst into tears....for a man
you handled this very well Mike :) 

On a lighter note; Brad wrote his last matric exam on Tuesday, woohoo, and passed his learners licence yesterday.  Well done my boy.  The girls have 2 more exams each to write and then we are home free.